Saturday, April 30, 2016
Thursday, April 14, 2016
WK17-WK20 (Leggo Home)
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*Contact Leyda and Brian at: BrianAndLeyda@yahoo.com | Para español, haga clic aquí. ================================================
GOD OF MIRACLES
Psalm 77:14 | You are the God who performs miracles; you display your power among the peoples.
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WEEK 17-18: Day 113 - Day 126 | July 27 - Aug 9 | Week 1 & Week 2 Corrected Age
Victoria just passed her original due date last week. The countdown is on and she is trying to make it home, but she’s being held back because of a few issues. Victoria’s scheduled discharge got pushed back twice and now she is supposed to come home with us on this upcoming Saturday. We are excited and nervous at the same time! Obviously excited about lil one being by our side just about all the time, but nervous because we won’t have all the medical equipment and more importantly medical professionals by her side 24/7. Truly speaking, we are ready for the Big D!
Overall Victoria is fine, but the issue that is holding her back is reflux. Most babies have some reflux or better yet they spit up their food to some degree. The problem with Victoria is that the reflux is causing mild respiratory & cardio problems at times and it seems to be burning her esophagus and causing her to cry.
How this all started is a bit of a mystery; however she did have diet changes that may have impacted this problem. The medical team tried two types of formulas on Victoria within the past two weeks. One was geared towards bone health but they discontinued that formula when her reflux got worse. The current one is specifically made to address reflux. After a few days on the new formula we could tell Victoria was doing better and feeling better. There was much less spitting up, less Brady’s (heart rate drop), and less crying. Now that she is feeling better, she just needs to go a week without a ‘Brady’ and then we can chunk deuce!
I previously mentioned formula for bone health. Regarding this topic, after a routine examination the doctors found that her ‘Alkaline-Phosphate’ level was high. This caused the docs to do further testing on other nutrient levels and for the most part the 'deeper examination’ came back with test in the normal range. The concern was if she had rickets diseases. They ruled that out; Thank God. Even with them ruling out a few negative conditions, the doctors were still concerned about Victoria’s bone health, vitamin D level, and calcium level. (Somehow the substances I listed are related and impact bone health.... don't ask me how.) To address this concern, they tried the special formula I mentioned but we discontinued, because a bigger problem needed to be confronted, the reflux and Brady problem. Gladly, the bone health issue did not seem like a huge concern for the doctors but we will still have to keep an eye on it.
In other news Victoria now weighs a whopping 7lbs 10oz, she had another favorable ultrasound on her brain, her eye health is great, she continues physical therapy on her limbs, and she is just one pretty little girl!... Oh and her Grandma Tomasa in the Dominican Republic was just granted a visitor visa to come visit her for the first time. Exciting news and expectation.
As we prepare to go home, one of the thoughts constantly running through our minds is whether or not we should get a heart rate and breathing monitor. Many would think it’s a no brainer and they’d get the monitor, that’s what I thought at first, but a few factors are influencing this decision (which is only partially up to us.) Pray for us to make a good decision and be comfortable with that decision.
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WEEK 19-20: Day 127 - Day 140 | Aug 10 - Aug 23 | Week 3 & Week 4 Corrected Age
LOOK AT GOD! For a complete week, Victoria had no Brady’s and no major medical issues that required constant medical attention. Therefore, on August 13th 2016, after 130 days, Victoria was discharged from Memorial Hermann Children’s Hospital! The doctor called me late Saturday morning and said in paraphrase, “You can take her home, but we are going to miss her.” ‘Twas so great to hear those words. As we were leaving the hospital filled with joy and smiles, I was still nervous! Every few minutes, I’d bend over and get close to Vicky making sure she was still breathing, because she no longer had monitors hooked up to her. My mother told me calm down and that Victoria is fine. Leyda, my father, my mother, and I all took turns pushing little one out the hospital. It was a fun and memorable moment. Leyda dolled-up Victoria and she looked so precious. The little fighter came home with us and we had an enjoyable first evening together with family.
The first few nights were very rough. She did not want to sleep but she did want to CRY! We got a rude awakening to the home life of parenting newborns. After two days she calmed down a tad. This could have been due to her just getting acclimated to a new environment.
Just under a week after discharge we went to our scheduled appointment with the pediatrician and the eye doctor. The pediatrician and nurse examined Victoria for about 15minutes combined and said she is doing just fine. She gave us some suggestions to combat constipation and gas but otherwise she gave us a thumbs up. The eye doctor’s report was even greater. The eye doctors said, “This baby has no problems, she will not need to return any more.” I was unclear if I heard her correctly so I asked the doctor to clarify her conclusion and she said, “Victoria’s eyes no longer have any issues that would require us to continue checking her. She can see an eye doctor on a routine child checkup when she is 4 or 5 years old.” WOW! Another battle won. Bless the Lord Oh my soul!
The physical therapist will see Victoria once a week indefinitely. She performs stretching-like exercises with Victoria for about 2hours each visit. This helps to ensure Vicky’s limbs and ligaments etc grow and function properly.
Words cannot fully describe the feeling of gratefulness that we have in our hearts. Victoria is a testament of God’s mercy, grace, and miraculous power.
*She was conceived through In-Vitro Fertilization because both of her parents have reproductive problems.
*She survived 3-1/2 weeks without water in the amniotic sac.
*She was born breathing with eyes open in the fifth month of pregnancy; 23.5 weeks gestation to be exact.
*She was born weighing 1lb 3oz.
*She survived a collapsed lung. (Pneumothorax)
*She got off the ventilator after six weeks; she got off all breathing equipment after 3-1/2 months.
*She shook off a skin illness scare.
*She shook off the ROP eye disease within a few weeks.
*She got NOT ONE infection while in NICU though the expectation was that she’d get many.
*She has full functionality in all of her limbs, fingers, and toes. (And she is strong and feisty!)
*She has no known abnormalities of the heart or brain. Thank the Lord!
*She is BEAUTIFUL!
The first few chapters of this precious life and story is complete and we have the Victory with Victoria. We continue to march forward to nurture this blessed creature of God and solicit your prayers as we march on. I’ll give you monthly updates on Vicky.
#EverSoGrateful
#ThankYouLord
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Wednesday, April 13, 2016
WK13-WK16 (Machine Support Gone)
*Please do not post this page or any pics on Facebook or any social media; however, feel free to share via email or text.
*Contact Leyda and Brian at: BrianAndLeyda@yahoo.com | Para español, haga clic aquí. ================================================
GOD GIVES PEACE
Philippians 4:6-7 | Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.
Video of Victoria's first three months prepared by Grandma Jennifer Cooper: Click Here.
WEEK 13-14: Day 85 - Day 98 | June 29 - July 12 | 35.5 -37.5 weeks gestation
Note: Prayer Request Below!
It’s been a fantastic two weeks! By the way, I’ll be updating every other week… aka I’m too lazy to keep this blog going with updates every week! Victoria is 3 months old now and she has been smooth sailing. In the past two weeks she has gained just under one pound and she now weighs 5lb 7oz! She increased her feeds from 40cc to 50cc per feeding and she's experiencing less problems breathing while eating. Because of this, she is now drinking about 80-90% of her feeds through the bottle. Additionally, she is only on 21% oxygen, which is what we healthy beings breathe. The nurses only need to bump her oxygen to 25% through the nasal cannula when she has a minor issue every now and then. Also on the good news side, Victoria is maintaining her temperature around 98.0 F and she continues to digest her food just fine.
Her arms still have a significant amount of shake in it when she moves. The physical therapist continue to work with her in the morning by stretching her limbs and helping her do exercises. They tell us she is progressing in this area, so that's comforting.
Lil girl’s eyes are ok. In one eye the doctor did not recognize ROP. Praise God! In the other eye she listed her findings as stage 2 Zone 2 ROP (Not bad).
Victoria looks more and more alert each week. At the same time she cries much more than what she did in the previous weeks. The doctor and the nurses say it’s just a sign that she is close to the full term stage. Her cry is very loud now. I heard it loud and clear way down the hallway one day which was at least 30 steps away. On the good side, I’m told that with a cry that loud, her lungs must be maturing well because babies need lung strength to audibly cry with force as she is doing. On the other hand, we know crying is normal for babies, but with Vicky being our first born child, it’s uneasy to her cry that loud. She calms down significantly after being fed and almost all the time her cries are due to her hunger. Feed me is the cry!
PRAYER REQUEST: The doctors found a skin condition on Victoria, but with what I’ve researched and with what the doctors informed us, we are not going to worry. Are hopes is that the issue will go away without treatment, which is the case for the vast majority of people and babies who get this condition. Be in prayer for Victoria on this issue.
We had a couple of baby showers and diaper parties this past weekend and it was fantastic. We must thank my parents Rudy & Jennifer and my brother and sister-in-law, RJ & Natalie for their efforts in making it a great occasion. A big thank you to my sister Debra for being the main planner for the first party and another big thank you to Kristin and Lissette and the many helpers at Faith Assembly Church who helped make the second shower/party very pleasant. It was fantastic to celebrate Victoria with family and friends. We love you guys.
While I am thanking folks, I must include Grandpa Leonte and Grandma Tomasa and Tio David and Tia Raquel. They’ve led a legion of folks praying for Victoria in the beautiful Caribbean country of the Dominican Republic. I’d also like to thank The FORT church and St. Monica’s Catholic Church for their continuous support. I’ll write more on appreciation another day because there are PLENTY more people and ministries to thank for helping us on our journey through this trial. We are grateful for the support and prayers and even more grateful to God. #FeelingBlessed!
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WEEK 15-16: Day 99 - Day 112 | July 13 - July 26 | 37.5 -39.5 weeks gestation
Victoria’s ‘look’ keeps changing. Every week we are trying to determine who she looks like in the family and the conclusion changes. Some say Leyda, some say me, some say Grandma Jennifer. Either way, she looks good!
Two more good weeks have passed. The doctors took Victoria off caffeine and she responded well. As a reminder the caffeine is used to help babies to remember to breathe. Two of the biggest milestones met in these weeks is that she no longer has a feeding tube inserted into her mouth and she is off the cannula! No more machine feeding support and no more machine breathing support! There was a swift climb this past week to no machine support especially on the breathing side. She was on 1 liter of oxygen flow from the nasal cannula for about 4 weeks and then within one week she went to ½ liter, then to ¼ liter, then to 1/8 liter and then she was off. She did have few Brady’s and desatts while off the tubes and on low flow oxygen. Most were minor and didn’t last long so we are very hopeful. But she did have a couple of breathing episodes that made the doctors and nurses say she needs to stay here a tad longer. She recovered on her own without major intervention. Most of her issue is reflux related after eating. Do PRAY for her in this area of reflux. As of now, it's the prime reason holding her back from being discharged. Above all, it’s such a blessing to see her tube free. God is Good!
The eye doctor visited again and said Victoria is ROP free. That was a Woohoo moment when we got the report. She will still need to follow up with the eye doctor frequently to make sure the eyes are developing well, but Victoria is on the right track. Supposedly her doctor is world renown so we are in good hands. In related news, she no longer has the skin condition that was a concern a few weeks ago. The previous test were probably a false positive.
Weight gain is going well. She gained 1lb completely and in two weeks and she now weighs 6lbs-7oz. She looks like a typical newborn. Praise God!
In other news, the medical team checked for a bone disease and it came back negative; Great. Also, they started giving Victoria a special mixture of milk and formula to ensure she gets food intake that gives her the best nutrition.
Leyda’s good friend Josie hosted a third baby shower along with her sisters and JC Salon customers. Thanks to all for pouring into Victoria’s life. We just about got the house ready for the little one. (Yes we are behind!)
Well the doctors and nurses are telling us the discharge date is now in hand’s reach. We may be out of here in one more week. Bless The Lord Oh My Soul!
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| 3 Months & 5lbs-2oz |
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| Hey Mommie! |
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| Yessir, Soy Proud Dad |
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| TLC from Grandma Jennifer |
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| Yessir, Soy Proud Grandpa |
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| Hey World! |
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| Beauty |
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| More Time With Grandma |
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| Baby Showers (Faith, Cypress, & JC Salon) |
Tuesday, April 12, 2016
WK10-WK12 (Big Bed Big Breaths)
*Please do not post this page or any pics on Facebook or any social media; however, feel free to share via email or text.
*Contact Leyda and Brian at: BrianAndLeyda@yahoo.com | Para español, haga clic aquí. ================================================
GOD IS OUR FRIEND
John 15:15 | I no longer call you servants, because a servant does not know his master's business. Instead, I have called you friends, for everything that I learned from my Father I have made known to you.
WEEK 10: Day 64 - Day 70 | June 8 - June 14 | 32.5 -33.5 weeks gestation
Prepping for Father’s Day this week! I am excited. I’m more excited because Victoria continues to progress. She finished the week at 3lbs 8oz and she is up to 32ml on feeds. As usual this is where she is doing very well.
Victoria is moving around so much. She tosses and turns in her sleep. Most of the time it doesn’t look like a sign of distress but rather it looks like she is just squirming around trying to find that super comfy position. One of the nurses told us that during her shift one day this week Victoria actually rolled off her bed and was pressed up against the side of the incubator! A tad scary but she is alright. It’s a good thing we can laugh at the incident.
The eye doctor returned this week and said that Victoria’s eyes are the same as the previous week. She is still at stage 2 ROP in zone 2. That is more good news than bad news in my opinion. We are hoping it goes away but thankful it hasn’t gotten any worse. The eye doctor will return weekly.
The medical team tried to take Victoria off the C-pap breathing machine again and she did very well for 24hrs but then all the sudden she had one major desatt and the attending doctor decided to go straight to C-Pap instead of letting her fight through the episode. I was indifferent on the decision. I just want the best for Victoria.
She had to get extra blood again this week. I’m hoping this will end soon, but it’s what she needs now.
Otherwise lil girl is doing well. Praying for God’s covering over Victoria and praying specifically for her eyes to improve and to be free of harm and also continuing to pray for lung development.
10 weeks complete! Always giving God praise for his mercy.
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WEEK 11: Day 71 - Day 77 | June 15 - June 21 | 33.5 -34.5 weeks gestation
What a week it has been on the positive side! She met a weight milestone, a feeding milestone, a breathing milestone, and a temperature milestone. … And I got to hangout with my daughter for my first Father’s day! Father’s day was special. We went to church and then we had brunch with my family; celebrating my Dad’s 40th Father’s Day and also celebrating the first Father’s Day for both my brother Rodolfo and me. After brunch we went to the hospital and I Kangaroo-held Victoria for the first time! We got almost 2 hours of dad & daughter time. Twas very memorable and a great Father’s Day.
When it comes to weight, this girl is getting big. She finished the week at 4lbs and she is gaining good weight each day. She also started drinking from a bottle and completed her first full bottle. This is a major step because it takes a significant amount of coordination for preemie babies to suck, breathe, and swallow bottle milk. She started out drinking one bottle a day and now she is on two bottles a day. Some days she does better than others.
Regarding her breathing, she chunked the deuce to the C-Pap machine or in other words she is no longer requiring the help of the C-Pap breathing machine. Her third attempt on the nasal cannula was much better than the previous two attempts. She only had a few desatts and Brady’s each day and most of them were minor. The desatts that were more significant were feeding related. With her body trying to figure out bottle feeding her breathing gets compromised. It’s a process that she’ll learn soon. She hasn’t perfected her performances on the cannula yet, but she is getting there.
Miss Victoria is no longer in her enclosed incubator box! She held her own temperature and she no longer needs the assistance of an incubator. Victoria moved to an open crib and it is much easier to interact with her.
Her eyes made a slight improvement. She still has stage 2 ROP in zone 2 of her eye but it has not spread. That's good news. Hopefully it'll continue to go away.
Because of all the progress Victoria made ,the doctors felt it was time to graduate her to the 8th floor! On the last day of this week Victoria moved from the Level 4 NICU to the Level 2 NICU. Level 2 NICU is for stable babies who aren’t too far from going home. I almost can’t believe I am writing this! “Stable babies who are close to going home.” Wow. God is good. We are grateful. We are not out of the danger zone yet, but the day of discharge feels nearby; I'm guessing within a month. We'll continue to pray for the mercy of Almighty God.
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WEEK 12: Day 78 - Day 84 | June 22 - June 28 | 34.5 -35.5 weeks gestation
In some ways we like Victoria’s new room in other ways we miss her old room. In particular we miss her primary nurses who did such an excellent job caring for her in her most critical stages. The good thing is we met new nurses on the next floor up who are classy individuals as well. The 8th floor or level 2 NICU is a more relaxed atmosphere which we like. The really nice part about her new location is that every baby has his or her own private room. Family time is much more intimate. While in this new room I gave Victoria a bath and I changed her diaper for the first time. I did not do so well and needed assistance on both. I’ll get it down eventually!
As usual, Victoria is doing very well on weight gain. She now weighs 4lbs 8oz. She is starting to look like a typical newborn now. That’s a nice feeling.
A physical therapist began giving assistance to Victoria to help her / us with bottle feeding. I believe she’ll also be helping with exercises to perform with Victoria to makes sure her limb development and coordination is progressing well.
Victoria received another ultrasound on her head and on the good side they found no brain bleeds or blood vessel problems; however they did find what they called a "choroid plexus cyst" Sounds scary, but they said it's very small and in almost all cases it just goes away within a few weeks. Praying this cysts dissipated rapidly. They’ll check again in a few weeks.
They eye doctor said her eye condition is improving and now she is at stage 1 ROP. Good news! Because she is improving the doctor said she’ll return in two weeks as opposed to every week.
As Always, we praise God for another positive week with our Princess.
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| Week 10: Mom helping Vicky with her pacifier. |
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| Week 11: First Bottle Feed |
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| Week 11: Father's Day Gift ...Kangarooing! |
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| Week 12: 4 pounder in her open crib! Bye-bye incubator! |
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| Week 12: Bonding Time. |
Monday, April 11, 2016
WEEK7 - WEEK9 (Extubate & Cries)
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*Contact Leyda and Brian at: BrianAndLeyda@yahoo.com | Para español, haga clic aquí.
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GOD HEALS
Luke 6:19 | People all tried to touch him (JESUS), because power was coming from him and healing them all.
WEEK 7: Day 43 - Day 49 | May 18 - May 24 | 29.5 -30.5 weeks gestation
What was that you were saying? ... I can hear you! This was the first week we heard Victoria cry! It was very soft, but strong enough for us to hear, and the sound of her crying was music to my ears.
Victoria had another great week. She passed a few milestones this week including one gigantic milestone; that being getting off the ventilator! She was able to wean down on the ventilator from 27 breaths per minute (BrPM) to 20 (BrPM) and then on May 20th the doctors gave the go ahead to ‘extubate’ her and move her to the next respiratory machine. I’m happy to say that the change from the conventional ventilator to the C-Pap breathing machine was successful. She no longer has a breathing tube in her mouth or trachea. Praise God! The doctors warned me that there is a significant chance that she may need to go back on the ventilator at some time to help her breathe, but the hope is she will not need it anymore. (Side note: Even if she does need to go back to the vent for some time, it’s still good that she got off the vent for a period in order to give her lungs healing time.)
Going to the C-Pap machine is a big adjustment for preemies because they are breathing much more on their own, as compared to the ventilator machine which does much of the breathing for the babies. Sometimes preemies literally forget to breathe because their involuntary systems are not mature. When a preemie stops breathing for 15 seconds the event is called an Apnea, and in many cases it is accompanied by a Bradycardia (Brady); an event when the heart rate rapidly drops below 100 BPM. Without the extreme help of the conventional ventilator it is common for premature babies to have Apneas and Brady’s (A’s & B’s). The frequency, the duration, and the severity of the Apnea’s and Brady’s will determine how good or poor a preemie is doing without the help of the ventilator and if changes need to be made.
After her first day on the C-Pap machine without an A-or-B, Victoria’s first night and following morning was a struggle. She had nine Apneas within 12 hours. The doctors decided to increase the C-Pap pressure setting to 7 units from 6 units and that seemed to help. Within the next 24 hours she only had 3 Apneas the whole time. On the C-Pap, the goal is to get the baby down to 4 units before attempting the last and least harsh breathing machine. On the other hand, for her size, 7 units is the highest pressure setting the doctors will use before contemplating going back to the ventilator. According to the nurses, considering her size and the length of time she has been on the C-Pap machine, Victoria is doing well by only having a handful of Apnea’s in an entire day. At the tail end of the week they tried to wean her C-Pap pressure setting back to 6 units but she lasted about a half day before signaling she need more help. On the good side her oxygen demand was less than 25% for the latter part of the week (very good.) We’re thankful for the breathing progress and hoping she continues to improve.
The one downside to C-Pap is that the headgear is tightly secured so that the nostril inserts remain in place. As a result the headgear covers, smushes, and swells up her face. I don’t like to see that.... but the cool thing is she looks like a kid astronaut!
She continues to have good progress in weight gain and in food toleration; however, she still has that big distended pot-belly that makes me uncomfortable. Nurses are still keeping an eye on her belly and thankfully none of the checks/exams revealed any problems with her digestive organs. She started the week at 940 grams and ended the week at 1100 grams. She hit three weight milestones! This includes: the 1 kg mark (1000 grams), the 1 lb gained mark (550g + 450g), and the birth-weight double mark (550g+ 550g). - I told my wife and family that I’d hold Victoria when she gets to 2.5lbs. That measure is creeping up quickly… maybe I should have said 3lbs!
After taking personal leave for a few weeks, I’m back at work. I’m grateful that my employer understood my situation and responded kindly. Before going back to work I met with the NICU manager to request certain nurses to care for Victoria. Having nurses who are diligent workers and are very familiar with Victoria’s health gives me peace while I am away.
Bless the Lord week seven is complete!
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WEEK 8: Day 50 - Day 56 | May 25 - May 31 | 30.5 -31.5 weeks gestation
We are blessed. Victoria is having another good week. Many nurses are impressed with her progress. The storm is not over, but some of my fearful feelings are starting to subside. We must continue to be vigilant by pushing for the best medical care and praying fervently day and night; at the same time we will celebrate the mercy and grace she has received from God Almighty thus far.
Victoria had a fairly good on weight gain. She is now receiving 22 ml on feeds, up from 20 ml earlier this week. She started at 1080 grams and ended the week at 1220 grams; about 2-3/4 lbs. Not bad. The other good thing regarding weight is that the rest of her body is growing wider and not just her stomach! It’s been hard seeing her stomach twice as big as the other half of her body.
She did have to get another blood transfusion this week, but this time more than two weeks have passed since the last time she needed blood; therefore her body is doing much better at producing blood. In comparison, during her first few weeks, she needed transfusions multiple times a week. Also, she discontinued supplements for sodium electrolytes. Her body is producing adequate amounts in this area so that’s good news as well.
Lil girl’s breathing is continuing to improve. She is still on the C-Pap machine. She was on a pressure setting of 7 units for the majority of the week and at the tail end of the week they weaned her to 6 units and did above average on this setting for a complete day. We are hoping she tolerates 6 units, thus getting closer to the goal of 4 units. (FYI, the pressure units are cm H2O or cm of water).
Victoria’s vitals have been good 90% of the time; however she did have some strange bumps in heart rate that lasted a few minutes multiple times this week. Sometimes she gets really excited and moves around likes she’s working out at the gym and at these moments her heart rate spikes really high. It got to around 220 BPM a few times but quickly returned to the 160-170 BPM range within a few minutes. Because it normalized quickly, the nurse weren’t too concerned. It’s still uncomfortable to see.
On another note, she also had her heart rate go far in the other direction a few times. She had a few light or mild Apnea’s and Brady’s this week [pause in breathing and rapid drop in heart rate]. There was nothing drastic, it didn’t last long, it wasn’t frequent, and most of the time she self-resolved; so there wasn’t too much to worry about. Yet, just like the high heart rate, it aint easy seeing her stop breathing for a short time.
Continuing to march forward with God’s covering!
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WEEK 9: Day 57 - Day 63 | June 1 - June 7 | 31.5 -32.5 weeks gestation
NEW PRAYER REQUEST BELOW!
Victoria made it to the 3lbs mark this week after getting her feeds bumped to 26ml; Praise God! At the end of the week she weighed 1390 grams or 3lb 1oz…. It’s almost time for me to hold her! Actually, I did hold her with my hands this week, but not quite the kangaroo hold. I’ll do that soon. I have to admit, I got lost in the moment when I was holding her. I was holding her just so that Leyda could change the bed sheets but after the sheets were changed, I just stood there holding her in admiration for a good 5+ minutes. ‘Twas a great moment for me.
This week was mixed with milestones met and also few concerns. Vitoria’s eyes are a concern for us now. Please pray that her eyes and related body parts and organs develop and function properly. She had her second eye exam this week and the doctor noticed that there was a small amount of ROP in both eyes which is short for a disease called Retinopathy of prematurity. As of now she is in stage 2 of 5 with stage 5 being the worse and stage 4 requiring treatment. This diseases involves unusual growth of the eye’s blood vessels near the retina and it can lead to significant vision impairment if not treated. The problem is not severe at this point and it can be self-corrected with general growth, but the doctors will have to keep an eye on it to make sure it does not worsen (no pun intended!) She will be receiving an eye exam every week from here forward. The good thing is that they did not find another related disease called ‘plus disease’ which makes the situation worse.
The somewhat great of this week is that Victoria temporarily moved from the C-Pap breathing machine to the nasal cannula breathing machine. The nasal cannula is the machine that only supplies extra oxygen to the baby but barely any pressure as opposed to the C-pap that provides a significant amount of pressure to inflate the lungs. Victoria did extremely well on the C-pap machine this week. During her 5 minute daily bath, while her breathing mask was removed, she was able to breathe with no signs of struggle. Because of her breathing success on a C-pap pressure setting of 5 units (as compared to 7 units the previous week) they decided to give her a try at the nasal cannula towards the tail end of the week. She did struggle with the cannula. She had over a dozen Apnea’s , Brady’s, and Desatts (ABD’s) combined in the first day [halt in breathing, rapid heart-beat drop, bad saturation of oxygen in the blood]. The doctors were aware of the situation, but they wanted to give her a chance at breathing more on her own. To help with her breathing the medical team increased her caffeine intake and they increased her oxygen supply from 21% to between 30% and 40%. The caffeine keeps her alert. Caffeine is used to prevent babies from forgetting to breathe. It’s very scary to witness Victoria struggling. Half of me wanted to see the team to push Victoria to get off the machines, the other half of me wanted to see the team to give her help breathing immediately, or put her back on the C-Pap where she was breathing just fine. The frustrations of NICU. She stayed on the cannula for over a day, but with the vaccine shots, the eye exam, and mostly having to breathe so much on her own, Victoria got a bit worn out. She had too many ABD’s so the doctors put her back on the C-Pap which is totally fine. She is only on a pressure setting of 4 units which is very low. The nurses told me it is very normal for preemies to have to go back and forth between these two machines a few times until they can handle being without the addition help. I am proud of her for going over a day without the assistance of the C-Pap machine. I am also glad that she is getting the breathing help she needs from the C-Pap.
Victoria officially made it to the two month mark this week. Another great milestone! Two months is also the time to get vaccines. This was a tad tough for me. I have mixed feelings on vaccines, but at the end of the day she was given the recommended vaccines and responded well.
We did have another unfortunate experience with a nurse who was not serving with excellence in our opinion. This time we spoke to the charge nurse to express our feelings after the shift was over. I simply requested not to have that particular nurse caring for Victoria in the future, especially while Victoria is transitioning machines; a time when she needs unadulterated attention. The charge nurse was very understanding and responded discretely and accordingly without causing issue. Thankfully the next few days going forward we were assigned some of our favorite nurses. Again having unpleasant service at the hospital has been rare for us, for the vast majority of the time (95%) it’s been two thumbs up on medical care at Memorial Hermann TMC.
Week number nine is a wrap! Thank you Jesus!
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*Contact Leyda and Brian at: BrianAndLeyda@yahoo.com | Para español, haga clic aquí.
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GOD HEALS
Luke 6:19 | People all tried to touch him (JESUS), because power was coming from him and healing them all.
WEEK 7: Day 43 - Day 49 | May 18 - May 24 | 29.5 -30.5 weeks gestation
What was that you were saying? ... I can hear you! This was the first week we heard Victoria cry! It was very soft, but strong enough for us to hear, and the sound of her crying was music to my ears.
Victoria had another great week. She passed a few milestones this week including one gigantic milestone; that being getting off the ventilator! She was able to wean down on the ventilator from 27 breaths per minute (BrPM) to 20 (BrPM) and then on May 20th the doctors gave the go ahead to ‘extubate’ her and move her to the next respiratory machine. I’m happy to say that the change from the conventional ventilator to the C-Pap breathing machine was successful. She no longer has a breathing tube in her mouth or trachea. Praise God! The doctors warned me that there is a significant chance that she may need to go back on the ventilator at some time to help her breathe, but the hope is she will not need it anymore. (Side note: Even if she does need to go back to the vent for some time, it’s still good that she got off the vent for a period in order to give her lungs healing time.)
Going to the C-Pap machine is a big adjustment for preemies because they are breathing much more on their own, as compared to the ventilator machine which does much of the breathing for the babies. Sometimes preemies literally forget to breathe because their involuntary systems are not mature. When a preemie stops breathing for 15 seconds the event is called an Apnea, and in many cases it is accompanied by a Bradycardia (Brady); an event when the heart rate rapidly drops below 100 BPM. Without the extreme help of the conventional ventilator it is common for premature babies to have Apneas and Brady’s (A’s & B’s). The frequency, the duration, and the severity of the Apnea’s and Brady’s will determine how good or poor a preemie is doing without the help of the ventilator and if changes need to be made.
After her first day on the C-Pap machine without an A-or-B, Victoria’s first night and following morning was a struggle. She had nine Apneas within 12 hours. The doctors decided to increase the C-Pap pressure setting to 7 units from 6 units and that seemed to help. Within the next 24 hours she only had 3 Apneas the whole time. On the C-Pap, the goal is to get the baby down to 4 units before attempting the last and least harsh breathing machine. On the other hand, for her size, 7 units is the highest pressure setting the doctors will use before contemplating going back to the ventilator. According to the nurses, considering her size and the length of time she has been on the C-Pap machine, Victoria is doing well by only having a handful of Apnea’s in an entire day. At the tail end of the week they tried to wean her C-Pap pressure setting back to 6 units but she lasted about a half day before signaling she need more help. On the good side her oxygen demand was less than 25% for the latter part of the week (very good.) We’re thankful for the breathing progress and hoping she continues to improve.
The one downside to C-Pap is that the headgear is tightly secured so that the nostril inserts remain in place. As a result the headgear covers, smushes, and swells up her face. I don’t like to see that.... but the cool thing is she looks like a kid astronaut!
She continues to have good progress in weight gain and in food toleration; however, she still has that big distended pot-belly that makes me uncomfortable. Nurses are still keeping an eye on her belly and thankfully none of the checks/exams revealed any problems with her digestive organs. She started the week at 940 grams and ended the week at 1100 grams. She hit three weight milestones! This includes: the 1 kg mark (1000 grams), the 1 lb gained mark (550g + 450g), and the birth-weight double mark (550g+ 550g). - I told my wife and family that I’d hold Victoria when she gets to 2.5lbs. That measure is creeping up quickly… maybe I should have said 3lbs!
After taking personal leave for a few weeks, I’m back at work. I’m grateful that my employer understood my situation and responded kindly. Before going back to work I met with the NICU manager to request certain nurses to care for Victoria. Having nurses who are diligent workers and are very familiar with Victoria’s health gives me peace while I am away.
Bless the Lord week seven is complete!
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WEEK 8: Day 50 - Day 56 | May 25 - May 31 | 30.5 -31.5 weeks gestation
We are blessed. Victoria is having another good week. Many nurses are impressed with her progress. The storm is not over, but some of my fearful feelings are starting to subside. We must continue to be vigilant by pushing for the best medical care and praying fervently day and night; at the same time we will celebrate the mercy and grace she has received from God Almighty thus far.
Victoria had a fairly good on weight gain. She is now receiving 22 ml on feeds, up from 20 ml earlier this week. She started at 1080 grams and ended the week at 1220 grams; about 2-3/4 lbs. Not bad. The other good thing regarding weight is that the rest of her body is growing wider and not just her stomach! It’s been hard seeing her stomach twice as big as the other half of her body.
She did have to get another blood transfusion this week, but this time more than two weeks have passed since the last time she needed blood; therefore her body is doing much better at producing blood. In comparison, during her first few weeks, she needed transfusions multiple times a week. Also, she discontinued supplements for sodium electrolytes. Her body is producing adequate amounts in this area so that’s good news as well.
Lil girl’s breathing is continuing to improve. She is still on the C-Pap machine. She was on a pressure setting of 7 units for the majority of the week and at the tail end of the week they weaned her to 6 units and did above average on this setting for a complete day. We are hoping she tolerates 6 units, thus getting closer to the goal of 4 units. (FYI, the pressure units are cm H2O or cm of water).
Victoria’s vitals have been good 90% of the time; however she did have some strange bumps in heart rate that lasted a few minutes multiple times this week. Sometimes she gets really excited and moves around likes she’s working out at the gym and at these moments her heart rate spikes really high. It got to around 220 BPM a few times but quickly returned to the 160-170 BPM range within a few minutes. Because it normalized quickly, the nurse weren’t too concerned. It’s still uncomfortable to see.
On another note, she also had her heart rate go far in the other direction a few times. She had a few light or mild Apnea’s and Brady’s this week [pause in breathing and rapid drop in heart rate]. There was nothing drastic, it didn’t last long, it wasn’t frequent, and most of the time she self-resolved; so there wasn’t too much to worry about. Yet, just like the high heart rate, it aint easy seeing her stop breathing for a short time.
Continuing to march forward with God’s covering!
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WEEK 9: Day 57 - Day 63 | June 1 - June 7 | 31.5 -32.5 weeks gestation
NEW PRAYER REQUEST BELOW!
Victoria made it to the 3lbs mark this week after getting her feeds bumped to 26ml; Praise God! At the end of the week she weighed 1390 grams or 3lb 1oz…. It’s almost time for me to hold her! Actually, I did hold her with my hands this week, but not quite the kangaroo hold. I’ll do that soon. I have to admit, I got lost in the moment when I was holding her. I was holding her just so that Leyda could change the bed sheets but after the sheets were changed, I just stood there holding her in admiration for a good 5+ minutes. ‘Twas a great moment for me.
This week was mixed with milestones met and also few concerns. Vitoria’s eyes are a concern for us now. Please pray that her eyes and related body parts and organs develop and function properly. She had her second eye exam this week and the doctor noticed that there was a small amount of ROP in both eyes which is short for a disease called Retinopathy of prematurity. As of now she is in stage 2 of 5 with stage 5 being the worse and stage 4 requiring treatment. This diseases involves unusual growth of the eye’s blood vessels near the retina and it can lead to significant vision impairment if not treated. The problem is not severe at this point and it can be self-corrected with general growth, but the doctors will have to keep an eye on it to make sure it does not worsen (no pun intended!) She will be receiving an eye exam every week from here forward. The good thing is that they did not find another related disease called ‘plus disease’ which makes the situation worse.
The somewhat great of this week is that Victoria temporarily moved from the C-Pap breathing machine to the nasal cannula breathing machine. The nasal cannula is the machine that only supplies extra oxygen to the baby but barely any pressure as opposed to the C-pap that provides a significant amount of pressure to inflate the lungs. Victoria did extremely well on the C-pap machine this week. During her 5 minute daily bath, while her breathing mask was removed, she was able to breathe with no signs of struggle. Because of her breathing success on a C-pap pressure setting of 5 units (as compared to 7 units the previous week) they decided to give her a try at the nasal cannula towards the tail end of the week. She did struggle with the cannula. She had over a dozen Apnea’s , Brady’s, and Desatts (ABD’s) combined in the first day [halt in breathing, rapid heart-beat drop, bad saturation of oxygen in the blood]. The doctors were aware of the situation, but they wanted to give her a chance at breathing more on her own. To help with her breathing the medical team increased her caffeine intake and they increased her oxygen supply from 21% to between 30% and 40%. The caffeine keeps her alert. Caffeine is used to prevent babies from forgetting to breathe. It’s very scary to witness Victoria struggling. Half of me wanted to see the team to push Victoria to get off the machines, the other half of me wanted to see the team to give her help breathing immediately, or put her back on the C-Pap where she was breathing just fine. The frustrations of NICU. She stayed on the cannula for over a day, but with the vaccine shots, the eye exam, and mostly having to breathe so much on her own, Victoria got a bit worn out. She had too many ABD’s so the doctors put her back on the C-Pap which is totally fine. She is only on a pressure setting of 4 units which is very low. The nurses told me it is very normal for preemies to have to go back and forth between these two machines a few times until they can handle being without the addition help. I am proud of her for going over a day without the assistance of the C-Pap machine. I am also glad that she is getting the breathing help she needs from the C-Pap.
Victoria officially made it to the two month mark this week. Another great milestone! Two months is also the time to get vaccines. This was a tad tough for me. I have mixed feelings on vaccines, but at the end of the day she was given the recommended vaccines and responded well.
We did have another unfortunate experience with a nurse who was not serving with excellence in our opinion. This time we spoke to the charge nurse to express our feelings after the shift was over. I simply requested not to have that particular nurse caring for Victoria in the future, especially while Victoria is transitioning machines; a time when she needs unadulterated attention. The charge nurse was very understanding and responded discretely and accordingly without causing issue. Thankfully the next few days going forward we were assigned some of our favorite nurses. Again having unpleasant service at the hospital has been rare for us, for the vast majority of the time (95%) it’s been two thumbs up on medical care at Memorial Hermann TMC.
Week number nine is a wrap! Thank you Jesus!
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| Week 6: Liveliness while lying down on Leyda. |
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| Week 7: Pacifier practice. Helps with learning how to eat. |
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| Week 8: Good sleep part 1. |
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| Week 8: Good sleep part 2. |
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| Week 9: First attempt on Nasal Cannula. |
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| Week 9: Cutie pie |
Sunday, April 10, 2016
WEEK4 - WEEK6 (2lbs & Kangaroo)
*Please do not post this page or any pics on Facebook or any social media; however, feel free to share via email or text.
*Contact Leyda and Brian at: BrianAndLeyda@yahoo.com | Para español, haga clic aquí.
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OUR GOD IS AN AWESOME GOD.
Neh 1:5-6 | O Lord God of Heaven, the Great and Awesome God who keeps covenant and steadfast love with those who love him and keep his commandments, let your ear be attentive and your eyes open, to hear the prayer of your servant...
WEEK 4: Day 22 - Day 28 | April 27 - May 3 | 26.5 -27.5 weeks gestation
Victoria is opening her eyes wider and looking lively when she is awake. In the first couple of weeks when and if she did open her eyes, it was just squints, but now we see a lot more facial expressions with her eyes wide open. It’s a joy to just see the lines in her forehead and her eye movement giving several expressions. I feel like she is communication with us. - My wife Leyda-Maria started Kangaroo Care this week and she loves it. Kangaroo Care is when the nurses place the baby on your chest and you lay back at an angle for at least an hour. Studies have shown that this is very beneficial health-wise to both the baby and the mother. Victoria is responding well to Kangaroo Care and it doesn’t take long for one to notice her breathing improves while lying on her mother’s chest. The nurses keep trying to get me to Kangaroo, but I need some more weight on Victoria until I hold her! I’ll eventually get there. For now I am content with laying my hands on her and praying over her while she is in her incubator bed.
Victoria’s heart rate was still a tad high from the variety of symptoms she exhibited and the treatment she received the previous week. At the end of this week her heart rate calmed down and it was back in the 160 range down from the 180’s. [160 is the edge of normal… 180 is high but acceptable] Similarly, her CO2 blood gas tests (lung function test) were in the high 60’s at the beginning of the week but it improved to the low 60’s by the week’s end. [60 is acceptable, perfect is in the 40’s]
Where Victoria had a really good week was in tolerating her feeds and in weight gain. In this week she bumped up from 9ml to 14ml (per 3hrs) on feeds ... she is now on one of the highest feeding systems which is 160ml/kg/day... This is good. Also, she went from weighing 610 grams to 720 grams or 1lb 9oz. While it is a praise report that she is gaining weight, she is giving us some concern with what they label a ‘distended belly;’ basically a big pot-belly looking stomach. Because of her oversized stomach, they have to keep a close watch on her digestive system. A distended belly can be the sign of a much worse underlying digestive problem called NEC. Thankfully, an X-ray, multiple physical exams, and bowel movement evaluations indicate she is doing just fine with digestion. Regardless, it’s still uneasy to see her disproportional belly.
In other good news, they took her IV line out because she wasn’t requiring meds anymore and they took out her ‘PICC line’ because she was now getting all of her nutrition through her feeds or into her stomach. The PICC line is similar to an IV line except it goes into a main vessel vs going into a vein on the forearm. Many of the medicines she’ll receive going forward will go into her stomach and through the digestive system. Fewer lines and tubes inside the body reduces the risk of infection, so this is a good thing. Plus, with the two lines removed, her arms are free and she can now swat and swim around with liberty not feeling locked down with all those cords attached.
Victoria’s oxygen requirement creeped up a tad to the mid 30’s (wrong direction but still not bad) and towards the end of the week she started this de-satting and self-resolving trend that was a tad frustrating. For simplicity, literally speaking, for 30 seconds her body had enough oxygen and then for the next 30 seconds her body was low on oxygen. Her body (lungs & blood) constantly did this up and down with oxygen and the alarms kept going off. The good thing is that not much intervention was needed to help her out… her body would fix the issue by itself (self-resolve). This trend is catching the medical team’s attention. They are not extremely worried about it, because she is self-resolving, but it is not to be ignored. Hopefully this de-satting issue will settle down soon.
Nurses have to constantly stay on their toes and make sure each baby is ok. This is a tough job with a lot of work and tiny margin for error. Being a NICU father has made me develop a profound respect for nurses, especially NICU nurses. I can give the same accolades to medical professionals as a whole. At any rate, I enjoy and appreciate about 90% of the nurses here, but every now and then we come across one or two who we’d rather not give care for our daughter (rare). We had two instances this week that made me uneasy. There was no confrontation or anything like that; just a tad bit of boiling-up on the inside when we felt patient-treatment was not done with excellence. Please pray with us for the hands that care for Victoria.
The alarms and the entire experience started to wear on me this week. I felt anxiety, stress, and nervousness all over my body. Yes, I’ve been praying and trying hard to not worry, but I am also human and sometimes these feelings get the most of me. I started getting sick at the end of the week so I made some changes and reduced my time in the hospital for a few days and took my sister’s advice to fit in some ‘me time.’
Overall Victoria is making progress. Bless the Lord we made it by week 4!
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WEEK 5: Day 29 - Day 35 | May 4 - May 10 | 27.5 -28.5 weeks gestation
Leyda-Maria celebrated her first Mother’s Day. It was great! Though circumstances weren’t the best we made it a joyous occasion celebrating motherhood having dinner with my mother and father, and with my brother and sister-in-law (another first time mother!) and their vibrant and cheerful son eight month old Quentin. Quentin brings smiles to everybody’s face. I can’t wait for the day when Victoria plays with her cousins Quentin and Davidson!
I started feeling better after 4 days of being sick early in the week. I had no major symptoms in those 4 days, but I didn’t want to jeopardize Victoria or any of the babies in NICU so when I did go the hospital in this time, I just prayed over her incubator bed and visited for only about 5-10 minutes and then I left to get good rest. On the other hand, Leyda-Maria was just fine and she kept Kangaroo-ing away almost every day. Victoria held onto Leyda's finger one day. That was a beautiful moment. - Memorial Hermann Children’s Hospital makes a big push for Kangaroo Care and skin to skin contact. It seems to be a very good practice with great results.
Just about every day this week, Victoria’s vitals looked good. Her heart rate averaged around 165 BPM, her temperatures were good, and her mean blood pressures were in the 40’s (good.)
Overall and relatively speaking, her digestive system was working well this week, though there were a few concerns. She didn’t do so great on weight gain this week but she still moved forward. She started the week weighing 720 grams and ended the week at 780 grams. Also, her feeds were bumped up from 14ml to 15ml. - [If you haven’t noticed by now, I like tracking numbers!... I almost feel like I would have enjoyed this career if I chose the medical field.] - The slower rate of weight gain could be because of multiple reasons, but it’s not an alarm as of now. - She spit up portions of her food multiple times this week, causing her to have to skip one of her meals, but in the big picture it was not enough spit ups for major changes to be made (good.) She also has the distended belly issue going on this week and to be safe, they took another x-ray checking her abdomen area for problems; thankfully the results revealed no issue. They think she has stuffed-up and gassy intestines that are just taking a while to excrete, but the good thing is that stool is coming out, just slowly. Because her weight gain slowed, and also because they made changes on her vent which will cause her to burn more calories, they will start giving her sodium and electrolytes which I think will be added to her milk feeds. These supplements will help her with energy and weight gain.
I mentioned the vent… Good news on the respiratory side. She is making some progress! Small steps but steps forward in the right direction. She continued to have blood gas results with CO2 levels in the low 60’s and high 50’s (good enough for her) so they began weaning the rate on the ventilator machine. She was receiving 50 breaths per minutes (BrPM) from the machine last week and they weaned her rate four times this week eventually getting to 35-BrPM. Again the end goal is 20-BrPM, and then she’ll go to a gentler machine.
She was still having the de-satting issue this week. One moment she had enough oxygen according to the monitors and the next minute she was reading very low. Just as with the previous week she was self-resolving which is good. They gave her ‘lasik’ medicine to see if it would alleviate her breathing issues as a whole and it seemed to have a slight favorable effect on both blood gas results and saturation levels. Towards the end of the week, she was still de-satting but in less amounts (good.) Her oxygen requirement to compensate for her de-satting was still relatively low, though it could be better. It ranged from 26% oxygen to 46% oxygen throughout the week, usually in the low 30’s.
We did experience one disturbing event at the end of the week. We weren't present while it happened but we received the report. Somehow, Victoria's breathing tube got loose and they had to change it out for a new E-tube. Thankfully the loose tube problem didn't last for a long time. The respiratory specialist changed, secured, and re-positioned the breathing tube, and after the intervention, with the new tube position, she seemed to be breathing better than she did the entire week. We are hoping this maintains.
Leyda's second and final post-operation doctor visit revealed no issue. She was given an all clear to continue normal activity after the six week mark.
Week 5 is complete and we continue to march forward with God’s mercy.
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WEEK 6: Day 36 - Day 42 | May 11 - May 17 | 28.5 -29.5 weeks gestation
It’s been a good week for Victoria as a whole. One of the biggest milestones met is that she passed the 2lb mark (910 grams). At the end of the week she weighed 940 grams. She gained 170 grams in one week! I gave her a high-five for her accomplishment. She has three other weight milestones coming up soon; that being: the 1 kg mark, which will also be the ‘1lb gained’ mark, and the 1100 grams mark, which would be doubling her birthweight. – May 15th was National Kangaroo Day and the hospital had a nice celebration to promote Kangaroo Care. Leyda participated, took some photos holding Victoria, and enjoyed the celebration. I am still waiting for the 2.5 lbs mark to hold my daughter. I’ll get there.
After having success weaning Victoria’s ventilator machine to 32 breaths per minutes (BrPM) we hit a wall and she did not tolerate weaning any further [Remember the goal is 20 BrPM.] She actually had to get bumped back up to 35 BrPM for a few days because her blood gas tests weren’t acceptable. Eventually at the end of the week she began to progress again. She tolerated 30 BrPM and then 27 BrPM with good follow up blood gas tests. Actually, the blood gas test taken nearly a day after weaning to 30 BrPM was surprisingly her best test ever. Her CO2 level was 55 (acceptable for all preemies; not just her) and her pH was 7.40 (The best number possible.) We are hoping these blood gas numbers continue to hold or improve as we progress. Early in the week, the doctors were discussing another round of steroid treatment but it's a debate between the MDs. They will discuss the plan of action with us before proceeding. The decision may be to just let her grow and hope for lung function improvement. That seems to be what’s occurring as she gets bigger. The team really wants to get her off the ventilator to prevent long term lung damage.
Another notable change is that they decided to decrease her feeds a tad with the hope of minimizing fluid buildup in her lungs; in-turn helping her lungs to function better. This was not a decision based on digestive issues; her digestive system is still on par. The decrease was only from 17ml to 15ml (per 3hrs).
All of her vitals looked good this week and her oxygen dependency ranged from 26%-36% (good). - The dessatting issue she had the previous two weeks hasn't been bad since they put in the new e-tube. Right now she only has between one and three desatting alarms go off every hour as compared to hearing the alarms every 5 minutes around 10 days ago.
This little girl likes to move around a lot! She swings, stretches, and grabs all day. On one side it’s good because it shows reaction and activity which are pluses in the doctor’s mind. On the other hand, she keeps grabbing her tubes. The tube grabbing along with her oral secretions is a slight concern because it can loosen the tape on her face. The tape holding her breathing and feeding tubes became a bit loose again this week so the respiratory specialists had to re-tape it (Not the same as re-tubing; that was not needed.) They are using a few methods to prevent Victoria from grabbing her tubes. One method is by restraining her arms and placing a strap on top of her bed and the other method is by placing small socks on her hands. She wiggled out the socks within 10 minutes so we may have to scratch that idea! The bed restrain worked, but it minimizes her freedom. Depending on how active she is, they may or may not restrain her.
Six weeks complete! We Thank God Almighty for His Grace.
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*Contact Leyda and Brian at: BrianAndLeyda@yahoo.com | Para español, haga clic aquí.
================================================
OUR GOD IS AN AWESOME GOD.
Neh 1:5-6 | O Lord God of Heaven, the Great and Awesome God who keeps covenant and steadfast love with those who love him and keep his commandments, let your ear be attentive and your eyes open, to hear the prayer of your servant...
WEEK 4: Day 22 - Day 28 | April 27 - May 3 | 26.5 -27.5 weeks gestation
Victoria is opening her eyes wider and looking lively when she is awake. In the first couple of weeks when and if she did open her eyes, it was just squints, but now we see a lot more facial expressions with her eyes wide open. It’s a joy to just see the lines in her forehead and her eye movement giving several expressions. I feel like she is communication with us. - My wife Leyda-Maria started Kangaroo Care this week and she loves it. Kangaroo Care is when the nurses place the baby on your chest and you lay back at an angle for at least an hour. Studies have shown that this is very beneficial health-wise to both the baby and the mother. Victoria is responding well to Kangaroo Care and it doesn’t take long for one to notice her breathing improves while lying on her mother’s chest. The nurses keep trying to get me to Kangaroo, but I need some more weight on Victoria until I hold her! I’ll eventually get there. For now I am content with laying my hands on her and praying over her while she is in her incubator bed.
Victoria’s heart rate was still a tad high from the variety of symptoms she exhibited and the treatment she received the previous week. At the end of this week her heart rate calmed down and it was back in the 160 range down from the 180’s. [160 is the edge of normal… 180 is high but acceptable] Similarly, her CO2 blood gas tests (lung function test) were in the high 60’s at the beginning of the week but it improved to the low 60’s by the week’s end. [60 is acceptable, perfect is in the 40’s]
Where Victoria had a really good week was in tolerating her feeds and in weight gain. In this week she bumped up from 9ml to 14ml (per 3hrs) on feeds ... she is now on one of the highest feeding systems which is 160ml/kg/day... This is good. Also, she went from weighing 610 grams to 720 grams or 1lb 9oz. While it is a praise report that she is gaining weight, she is giving us some concern with what they label a ‘distended belly;’ basically a big pot-belly looking stomach. Because of her oversized stomach, they have to keep a close watch on her digestive system. A distended belly can be the sign of a much worse underlying digestive problem called NEC. Thankfully, an X-ray, multiple physical exams, and bowel movement evaluations indicate she is doing just fine with digestion. Regardless, it’s still uneasy to see her disproportional belly.
In other good news, they took her IV line out because she wasn’t requiring meds anymore and they took out her ‘PICC line’ because she was now getting all of her nutrition through her feeds or into her stomach. The PICC line is similar to an IV line except it goes into a main vessel vs going into a vein on the forearm. Many of the medicines she’ll receive going forward will go into her stomach and through the digestive system. Fewer lines and tubes inside the body reduces the risk of infection, so this is a good thing. Plus, with the two lines removed, her arms are free and she can now swat and swim around with liberty not feeling locked down with all those cords attached.
Victoria’s oxygen requirement creeped up a tad to the mid 30’s (wrong direction but still not bad) and towards the end of the week she started this de-satting and self-resolving trend that was a tad frustrating. For simplicity, literally speaking, for 30 seconds her body had enough oxygen and then for the next 30 seconds her body was low on oxygen. Her body (lungs & blood) constantly did this up and down with oxygen and the alarms kept going off. The good thing is that not much intervention was needed to help her out… her body would fix the issue by itself (self-resolve). This trend is catching the medical team’s attention. They are not extremely worried about it, because she is self-resolving, but it is not to be ignored. Hopefully this de-satting issue will settle down soon.
Nurses have to constantly stay on their toes and make sure each baby is ok. This is a tough job with a lot of work and tiny margin for error. Being a NICU father has made me develop a profound respect for nurses, especially NICU nurses. I can give the same accolades to medical professionals as a whole. At any rate, I enjoy and appreciate about 90% of the nurses here, but every now and then we come across one or two who we’d rather not give care for our daughter (rare). We had two instances this week that made me uneasy. There was no confrontation or anything like that; just a tad bit of boiling-up on the inside when we felt patient-treatment was not done with excellence. Please pray with us for the hands that care for Victoria.
The alarms and the entire experience started to wear on me this week. I felt anxiety, stress, and nervousness all over my body. Yes, I’ve been praying and trying hard to not worry, but I am also human and sometimes these feelings get the most of me. I started getting sick at the end of the week so I made some changes and reduced my time in the hospital for a few days and took my sister’s advice to fit in some ‘me time.’
Overall Victoria is making progress. Bless the Lord we made it by week 4!
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WEEK 5: Day 29 - Day 35 | May 4 - May 10 | 27.5 -28.5 weeks gestation
Leyda-Maria celebrated her first Mother’s Day. It was great! Though circumstances weren’t the best we made it a joyous occasion celebrating motherhood having dinner with my mother and father, and with my brother and sister-in-law (another first time mother!) and their vibrant and cheerful son eight month old Quentin. Quentin brings smiles to everybody’s face. I can’t wait for the day when Victoria plays with her cousins Quentin and Davidson!
I started feeling better after 4 days of being sick early in the week. I had no major symptoms in those 4 days, but I didn’t want to jeopardize Victoria or any of the babies in NICU so when I did go the hospital in this time, I just prayed over her incubator bed and visited for only about 5-10 minutes and then I left to get good rest. On the other hand, Leyda-Maria was just fine and she kept Kangaroo-ing away almost every day. Victoria held onto Leyda's finger one day. That was a beautiful moment. - Memorial Hermann Children’s Hospital makes a big push for Kangaroo Care and skin to skin contact. It seems to be a very good practice with great results.
Just about every day this week, Victoria’s vitals looked good. Her heart rate averaged around 165 BPM, her temperatures were good, and her mean blood pressures were in the 40’s (good.)
Overall and relatively speaking, her digestive system was working well this week, though there were a few concerns. She didn’t do so great on weight gain this week but she still moved forward. She started the week weighing 720 grams and ended the week at 780 grams. Also, her feeds were bumped up from 14ml to 15ml. - [If you haven’t noticed by now, I like tracking numbers!... I almost feel like I would have enjoyed this career if I chose the medical field.] - The slower rate of weight gain could be because of multiple reasons, but it’s not an alarm as of now. - She spit up portions of her food multiple times this week, causing her to have to skip one of her meals, but in the big picture it was not enough spit ups for major changes to be made (good.) She also has the distended belly issue going on this week and to be safe, they took another x-ray checking her abdomen area for problems; thankfully the results revealed no issue. They think she has stuffed-up and gassy intestines that are just taking a while to excrete, but the good thing is that stool is coming out, just slowly. Because her weight gain slowed, and also because they made changes on her vent which will cause her to burn more calories, they will start giving her sodium and electrolytes which I think will be added to her milk feeds. These supplements will help her with energy and weight gain.
I mentioned the vent… Good news on the respiratory side. She is making some progress! Small steps but steps forward in the right direction. She continued to have blood gas results with CO2 levels in the low 60’s and high 50’s (good enough for her) so they began weaning the rate on the ventilator machine. She was receiving 50 breaths per minutes (BrPM) from the machine last week and they weaned her rate four times this week eventually getting to 35-BrPM. Again the end goal is 20-BrPM, and then she’ll go to a gentler machine.
She was still having the de-satting issue this week. One moment she had enough oxygen according to the monitors and the next minute she was reading very low. Just as with the previous week she was self-resolving which is good. They gave her ‘lasik’ medicine to see if it would alleviate her breathing issues as a whole and it seemed to have a slight favorable effect on both blood gas results and saturation levels. Towards the end of the week, she was still de-satting but in less amounts (good.) Her oxygen requirement to compensate for her de-satting was still relatively low, though it could be better. It ranged from 26% oxygen to 46% oxygen throughout the week, usually in the low 30’s.
We did experience one disturbing event at the end of the week. We weren't present while it happened but we received the report. Somehow, Victoria's breathing tube got loose and they had to change it out for a new E-tube. Thankfully the loose tube problem didn't last for a long time. The respiratory specialist changed, secured, and re-positioned the breathing tube, and after the intervention, with the new tube position, she seemed to be breathing better than she did the entire week. We are hoping this maintains.
Leyda's second and final post-operation doctor visit revealed no issue. She was given an all clear to continue normal activity after the six week mark.
Week 5 is complete and we continue to march forward with God’s mercy.
==================================================================
WEEK 6: Day 36 - Day 42 | May 11 - May 17 | 28.5 -29.5 weeks gestation
It’s been a good week for Victoria as a whole. One of the biggest milestones met is that she passed the 2lb mark (910 grams). At the end of the week she weighed 940 grams. She gained 170 grams in one week! I gave her a high-five for her accomplishment. She has three other weight milestones coming up soon; that being: the 1 kg mark, which will also be the ‘1lb gained’ mark, and the 1100 grams mark, which would be doubling her birthweight. – May 15th was National Kangaroo Day and the hospital had a nice celebration to promote Kangaroo Care. Leyda participated, took some photos holding Victoria, and enjoyed the celebration. I am still waiting for the 2.5 lbs mark to hold my daughter. I’ll get there.
After having success weaning Victoria’s ventilator machine to 32 breaths per minutes (BrPM) we hit a wall and she did not tolerate weaning any further [Remember the goal is 20 BrPM.] She actually had to get bumped back up to 35 BrPM for a few days because her blood gas tests weren’t acceptable. Eventually at the end of the week she began to progress again. She tolerated 30 BrPM and then 27 BrPM with good follow up blood gas tests. Actually, the blood gas test taken nearly a day after weaning to 30 BrPM was surprisingly her best test ever. Her CO2 level was 55 (acceptable for all preemies; not just her) and her pH was 7.40 (The best number possible.) We are hoping these blood gas numbers continue to hold or improve as we progress. Early in the week, the doctors were discussing another round of steroid treatment but it's a debate between the MDs. They will discuss the plan of action with us before proceeding. The decision may be to just let her grow and hope for lung function improvement. That seems to be what’s occurring as she gets bigger. The team really wants to get her off the ventilator to prevent long term lung damage.
Another notable change is that they decided to decrease her feeds a tad with the hope of minimizing fluid buildup in her lungs; in-turn helping her lungs to function better. This was not a decision based on digestive issues; her digestive system is still on par. The decrease was only from 17ml to 15ml (per 3hrs).
All of her vitals looked good this week and her oxygen dependency ranged from 26%-36% (good). - The dessatting issue she had the previous two weeks hasn't been bad since they put in the new e-tube. Right now she only has between one and three desatting alarms go off every hour as compared to hearing the alarms every 5 minutes around 10 days ago.
This little girl likes to move around a lot! She swings, stretches, and grabs all day. On one side it’s good because it shows reaction and activity which are pluses in the doctor’s mind. On the other hand, she keeps grabbing her tubes. The tube grabbing along with her oral secretions is a slight concern because it can loosen the tape on her face. The tape holding her breathing and feeding tubes became a bit loose again this week so the respiratory specialists had to re-tape it (Not the same as re-tubing; that was not needed.) They are using a few methods to prevent Victoria from grabbing her tubes. One method is by restraining her arms and placing a strap on top of her bed and the other method is by placing small socks on her hands. She wiggled out the socks within 10 minutes so we may have to scratch that idea! The bed restrain worked, but it minimizes her freedom. Depending on how active she is, they may or may not restrain her.
Six weeks complete! We Thank God Almighty for His Grace.
==================================================================
 |
| Week 4: First Family Photo on first day of Kangaroo Care. |
 |
| Week 4: Mom and daughter time in day 1 of Kangaroo Care. |
 |
| Week 5: Family Selfie! |
 |
| Week 5: Gaining weight, opening eyes, very alert, looking livelier. |
 |
| Week 5: Victoria grabbing Leyda's finger. |
 |
| Week 5: Grabbing mom's finger. |
Week 5: Victoria showing some facial expressions.
Saturday, April 9, 2016
WEEK1 - WEEK3 (Ventilator Days)
*Please do not post this page or any pics on Facebook or any social media; however, feel free to share via email or text.
*Contact Leyda and Brian at: BrianAndLeyda@yahoo.com | Para español, haga clic aquí.
================================================
GOD IS GOOD.
Psalm 145:9 | The Lord is good to all, And His tender mercies are over all His works.
WEEK 1: Day 1 - Day 7 | April 6 - April 12 | 23.5 -24.5 weeks gestation
This is the reality week filled with mixed emotions. I'm glad my wife is not experiencing the excruciating pain anymore, I'm thrilled my daughter is alive and breathing, but I realize it's a long road ahead until my daughter comes home and until then she is going to need a lot of medical treatment beyond what I ever imagined. It's really hard to accept, but it is what it is.
Victoria's first few days were a tad rocky. I had no idea it was rocky because I didn't know what was the norm. Her heart-rate got as high as 220 (norm 120-160) and her blood pressure was very low, she was getting a lot of breathing help from the ventilation machine, and her white blood count was high. The doctors and nurses worked hard for the first few days to diagnose and treat her properly and eventually with the help of machines, dopamine, antibiotics and other medicines, her vitals stabilized.
While in NICU, we are getting to know the doctors and nurses well. I'll refer to them as the team. - - - Let me take this time to say the the medical professionals at Memorial Hermann Children's Hospital are fantastic. We're thankful for the treatment we are getting. I'll write more on this in another post. - - - Each day they measure and weigh Victoria. I noticed she was losing weight and this concerned me because she was so tiny already. The nurses told me this is normal and expected and most babies at any age will lose near 10% of their birth-weight in the first week or so. In addition to this, the protocol for this team was to not feed Victoria for the majority of the first week until she fully stabilizes, which meant she'd stay very lightweight for a while. Though she was not being fed, she was getting nutrition via an IV. She was born at 550 grams and dropped to 500 grams in the first week. Most information in the medical field for preemies is given in grams so I'll use this system most of the time.... Roughly speaking, 500 grams is apprx 1lb & 1000 grams is apprx 2 lbs.
One of the key components the team monitors is the baby's oxygen saturation level. As I understand, it's simply how well oxygen is saturating in the blood. This is read from a probe on Victoria's foot. There is an ideal level where you want this to stand. If it's too low then they'll pump more oxygen through her ventilation tube and vice versa. The goal is to wean the oxygen support to 21% but only when she requires less. She started out requiring near 65% oxygen and within the first week she was requiring near 25%. That's very good progress. Keep in mind preemies go up and down in this area, but requiring low levels of oxygen is very good. FYI, the more oxygen needed from the machine, the higher the potential damage to the baby's lungs; yet at the same time, not enough oxygen in the body/blood can cause damage to many other organs.... it's a delicate balance. As with a lot of the machines, settings, and medicine; the thing that is used to help can also hurt, so every change and plan of action is thoroughly thought through.
A few of the tests performed on Victoria showed signs of jaundice, anemia, and low sugar. For the jaundice issue they treated her with 'photo therapy' which is a fairly intense blue light shining on top of her for a few hours. They gave her preemie eye-shades to protect her eyes when the light was shining. Shes did look kind of cool with her shades on! For the low sugar, they gave her liquids via an IV which replenished the sugar level, and for her anemia she required blood transfusions. A lot going on.
One of the scary things that occurred late in this week is that one chest x-ray revealed that Victoria had a pneumothorax, which is a type of lung collapse when vented air somehow escapes and enters the chest cavity instead of the lungs. They were able to fix this problem by literally poking her chest with a needle and allowing the air to come out. I didn't see it, but it's still hard to know what happened. It seems like they caught the issue early and nothing adverse resulted. The team told me they don't expect this issue to occur again. I'll simple agree with them.
Leyda was still in the hospital for most of week 1 and she was discharged 4 days after delivery. She came home with moderate pain but overall no major issues. While in the hospital, Leyda was able to see Victoria again I think on Day 3 (they were in the same hospital.) - Much of week 1 was accepting the reality, making sure Leyda was ok and progressing, getting to know the NICU team, and trying to learn all this preemie and NICU stuff.
Thanking God we made it through Week 1.
==================================================================
WEEK 2: Day 8 - Day 14 | April 13 - April 19 | 24.5 -25.5 weeks gestation
We are making one trip to the medical center each day and staying for a few hours each time. Our precious daughter is in there fighting and hanging on; Thank God. It's both a joy and scare to see her in her bed. She moves around so much and it's cool to see squirm into a comfy position. Some nurses jokingly call her feisty because she kicks people when they touch her!
In week two Victoria started a steroid treatment with a drug called dexomethozone. The hope was that the medicine would strengthen her lungs and she'd get off the conventional ventilator breathing machine. She began to respond well to the steroids at first, but halfway through the 10day treatment when they started weaning the dosage, she stopped improving and eventually regressed. If she could stay on steroids she may have done better, but they can't keep her on high doses too long because of side effects. [Note: there are mainly about 5 different types of respiratory machines that the NICU uses to help preemies breathe... Some are more powerful than others.... The plan for all preemies is to get them off the harsher machines and move them to the more gentle ones, and then completely off all machines, but it can't be done until the baby's lungs start functioning better. By 'harsh' I mean it can cause damage to their lungs. The conventional ventilator is the machine Victoria started on and continues to use. It's one of the harsher machines... Simplistically speaking.. 3rd of 5]
One of the main test the team uses to check to see how well her lungs are functioning is the 'blood-gas' test. This term is used quite frequently. It's a blood test that basically tells how well her lungs are exchanging oxygen and carbon dioxide with her blood. The team is always very interested in the CO2 level. Victoria's CO2 levels have always been high. Ideal is in the 40's, high is 60's; and 80+ is pretty bad. Victoria went from CO2's in the 50's while on steroids to the 70's when she got off. Bummer. To compensate for her high CO2 levels the doctors turn up the settings on her ventilator. This helps to get more oxygen in her blood and CO2 out, but again it's harsh on her lungs.... It's a frustrating delicate battle. Eventually by turning up Victoria's vent settings her CO2 levels came back to the 60's which the doctors were willing to accept, though still high. One of the main doctors told us her best path to better lung function is general growth... Which brings me to my next point on feeds.
The good thing about this week is that Victoria began getting milk feeds and she tolerated it well. This is a big deal because many premature babies have problems digesting their food and w/o feeds, growth slows down. Victoria started out getting just 1ml of milk every 3hours and at the week's end she was at 2ml. She urinated and defecated just fine which is very important also.
They did a very important ultrasound on her brain and found no brain bleed which is very good. (All preemies are checked for brain bleeds... An unfavorable yet somewhat treatable condition.)
Additionally she stopped getting the blue light treatment for jaundice which is good, and they reduced her bed humidity to help her adjust to the outside atmosphere.
Leyda went to her first of two post-operation doctor visits. Thankfully, the doctor was satisfied with her health status.
We've been inundated with love and support and we appreciate it so much. Thank all of you and most importantly Thank the Lord for carrying Victoria through week 2.
==================================================================
WEEK 3: Day 15 - Day 21 | April 20 - April 26 | 25.5 -26.5 weeks gestation
Leyda and I temporarily relocated closer to the medical center. This allows us to see The Princess twice a day and it also allows us to communicate with the day shift and night shift doctors and nurses. At this time we are touching Victoria a lot more. The incubator has small doors where you can stick your hand in and touch and hold her. We believe in healing through skin to skin contact. Everyday we lay our hands on her to pray with her. Sometimes she kicks us away, but I think it’s a love kick!
In week 3, Victoria didn’t gain much weight. She did get back to her birthweight which is good, but she plateaued around her birthweight for several days most of this week. The good thing is they were able to increase her milk feeds from 3ml to 9ml [per 3 hrs]. That was a nice size jump and should help her grow. They performed a heart test which consisted of an ‘ekg and an echo.’ They do this test periodically to check to see if her ‘PDA’ closed. [lots of acronyms] A closed PDA is good, an open PDA can cause bad exchanges between the heart, blood, and lungs. Victoria’s PDA was slightly open but not enough to require treatment. This was not a bad test outcome at all, yet not the perfect outcome either. FYI, an open PDA is quite common in preemies and is treatable, but the treatment is not easy-breezy. The conclusion was to check again in a couple of weeks or check sooner if she revealed any signs indicating another test is needed.
Most of this week Victoria’s blood gas tests (lung function tests) were high but stable. They run these once a day. Her CO2 levels were in the 60’s which is high but somewhat acceptable. Because her ventilator settings were already fairly strong, they do not want to push her breathing support any higher to bring down the CO2 count. Logically, they chose not to wean her any from the vent because the blood gas levels did not improve. It’s uneasy seeing her on the big machine but I know she needs it right now. I await the day when she gets off the breathing machines in good health.
During the early part of the week she started to have some unfavorable symptoms, and the symptoms worsened for a few days. She was not urinating much which is a kidney concern, she had a very elevated heart rate ranging from 180-210 bpm, her blood pressure was getting borderline reads on both sides, and her white blood cell (wbc) count was high. The medical team had a tad bit of concern in their demeanor and usually they have been ‘not too alarmed’ by most of her symptoms in the past couple of weeks. This was making me nervous. They did an ultrasound on her kidneys to make sure it was looking & functioning ok and it came back revealing no issue. Thank God. The kidney issues were ruled out, but the overall problem still existed. The doctors suspected she was developing an infection, though they weren't able to grow a 'bacterial culture' from her blood. The medical team began to treat her with dopamine for the urine issue, and antibiotics for the wbc count issue and near the end of the week, her vitals began to normalize and she was back to normal digestion and excretion…. Thankfully, the team did not have to stop her milk feeds which they were getting ready halt if she had gotten any worse. We Bless God. Another battle won.
We are thankful that Miss Victoria made it past week three.
==================================================================
*Contact Leyda and Brian at: BrianAndLeyda@yahoo.com | Para español, haga clic aquí.
================================================
GOD IS GOOD.
Psalm 145:9 | The Lord is good to all, And His tender mercies are over all His works.
WEEK 1: Day 1 - Day 7 | April 6 - April 12 | 23.5 -24.5 weeks gestation
This is the reality week filled with mixed emotions. I'm glad my wife is not experiencing the excruciating pain anymore, I'm thrilled my daughter is alive and breathing, but I realize it's a long road ahead until my daughter comes home and until then she is going to need a lot of medical treatment beyond what I ever imagined. It's really hard to accept, but it is what it is.
Victoria's first few days were a tad rocky. I had no idea it was rocky because I didn't know what was the norm. Her heart-rate got as high as 220 (norm 120-160) and her blood pressure was very low, she was getting a lot of breathing help from the ventilation machine, and her white blood count was high. The doctors and nurses worked hard for the first few days to diagnose and treat her properly and eventually with the help of machines, dopamine, antibiotics and other medicines, her vitals stabilized.
While in NICU, we are getting to know the doctors and nurses well. I'll refer to them as the team. - - - Let me take this time to say the the medical professionals at Memorial Hermann Children's Hospital are fantastic. We're thankful for the treatment we are getting. I'll write more on this in another post. - - - Each day they measure and weigh Victoria. I noticed she was losing weight and this concerned me because she was so tiny already. The nurses told me this is normal and expected and most babies at any age will lose near 10% of their birth-weight in the first week or so. In addition to this, the protocol for this team was to not feed Victoria for the majority of the first week until she fully stabilizes, which meant she'd stay very lightweight for a while. Though she was not being fed, she was getting nutrition via an IV. She was born at 550 grams and dropped to 500 grams in the first week. Most information in the medical field for preemies is given in grams so I'll use this system most of the time.... Roughly speaking, 500 grams is apprx 1lb & 1000 grams is apprx 2 lbs.
One of the key components the team monitors is the baby's oxygen saturation level. As I understand, it's simply how well oxygen is saturating in the blood. This is read from a probe on Victoria's foot. There is an ideal level where you want this to stand. If it's too low then they'll pump more oxygen through her ventilation tube and vice versa. The goal is to wean the oxygen support to 21% but only when she requires less. She started out requiring near 65% oxygen and within the first week she was requiring near 25%. That's very good progress. Keep in mind preemies go up and down in this area, but requiring low levels of oxygen is very good. FYI, the more oxygen needed from the machine, the higher the potential damage to the baby's lungs; yet at the same time, not enough oxygen in the body/blood can cause damage to many other organs.... it's a delicate balance. As with a lot of the machines, settings, and medicine; the thing that is used to help can also hurt, so every change and plan of action is thoroughly thought through.
A few of the tests performed on Victoria showed signs of jaundice, anemia, and low sugar. For the jaundice issue they treated her with 'photo therapy' which is a fairly intense blue light shining on top of her for a few hours. They gave her preemie eye-shades to protect her eyes when the light was shining. Shes did look kind of cool with her shades on! For the low sugar, they gave her liquids via an IV which replenished the sugar level, and for her anemia she required blood transfusions. A lot going on.
One of the scary things that occurred late in this week is that one chest x-ray revealed that Victoria had a pneumothorax, which is a type of lung collapse when vented air somehow escapes and enters the chest cavity instead of the lungs. They were able to fix this problem by literally poking her chest with a needle and allowing the air to come out. I didn't see it, but it's still hard to know what happened. It seems like they caught the issue early and nothing adverse resulted. The team told me they don't expect this issue to occur again. I'll simple agree with them.
Leyda was still in the hospital for most of week 1 and she was discharged 4 days after delivery. She came home with moderate pain but overall no major issues. While in the hospital, Leyda was able to see Victoria again I think on Day 3 (they were in the same hospital.) - Much of week 1 was accepting the reality, making sure Leyda was ok and progressing, getting to know the NICU team, and trying to learn all this preemie and NICU stuff.
Thanking God we made it through Week 1.
==================================================================
WEEK 2: Day 8 - Day 14 | April 13 - April 19 | 24.5 -25.5 weeks gestation
We are making one trip to the medical center each day and staying for a few hours each time. Our precious daughter is in there fighting and hanging on; Thank God. It's both a joy and scare to see her in her bed. She moves around so much and it's cool to see squirm into a comfy position. Some nurses jokingly call her feisty because she kicks people when they touch her!
In week two Victoria started a steroid treatment with a drug called dexomethozone. The hope was that the medicine would strengthen her lungs and she'd get off the conventional ventilator breathing machine. She began to respond well to the steroids at first, but halfway through the 10day treatment when they started weaning the dosage, she stopped improving and eventually regressed. If she could stay on steroids she may have done better, but they can't keep her on high doses too long because of side effects. [Note: there are mainly about 5 different types of respiratory machines that the NICU uses to help preemies breathe... Some are more powerful than others.... The plan for all preemies is to get them off the harsher machines and move them to the more gentle ones, and then completely off all machines, but it can't be done until the baby's lungs start functioning better. By 'harsh' I mean it can cause damage to their lungs. The conventional ventilator is the machine Victoria started on and continues to use. It's one of the harsher machines... Simplistically speaking.. 3rd of 5]
One of the main test the team uses to check to see how well her lungs are functioning is the 'blood-gas' test. This term is used quite frequently. It's a blood test that basically tells how well her lungs are exchanging oxygen and carbon dioxide with her blood. The team is always very interested in the CO2 level. Victoria's CO2 levels have always been high. Ideal is in the 40's, high is 60's; and 80+ is pretty bad. Victoria went from CO2's in the 50's while on steroids to the 70's when she got off. Bummer. To compensate for her high CO2 levels the doctors turn up the settings on her ventilator. This helps to get more oxygen in her blood and CO2 out, but again it's harsh on her lungs.... It's a frustrating delicate battle. Eventually by turning up Victoria's vent settings her CO2 levels came back to the 60's which the doctors were willing to accept, though still high. One of the main doctors told us her best path to better lung function is general growth... Which brings me to my next point on feeds.
The good thing about this week is that Victoria began getting milk feeds and she tolerated it well. This is a big deal because many premature babies have problems digesting their food and w/o feeds, growth slows down. Victoria started out getting just 1ml of milk every 3hours and at the week's end she was at 2ml. She urinated and defecated just fine which is very important also.
They did a very important ultrasound on her brain and found no brain bleed which is very good. (All preemies are checked for brain bleeds... An unfavorable yet somewhat treatable condition.)
Additionally she stopped getting the blue light treatment for jaundice which is good, and they reduced her bed humidity to help her adjust to the outside atmosphere.
Leyda went to her first of two post-operation doctor visits. Thankfully, the doctor was satisfied with her health status.
We've been inundated with love and support and we appreciate it so much. Thank all of you and most importantly Thank the Lord for carrying Victoria through week 2.
==================================================================
WEEK 3: Day 15 - Day 21 | April 20 - April 26 | 25.5 -26.5 weeks gestation
Leyda and I temporarily relocated closer to the medical center. This allows us to see The Princess twice a day and it also allows us to communicate with the day shift and night shift doctors and nurses. At this time we are touching Victoria a lot more. The incubator has small doors where you can stick your hand in and touch and hold her. We believe in healing through skin to skin contact. Everyday we lay our hands on her to pray with her. Sometimes she kicks us away, but I think it’s a love kick!
In week 3, Victoria didn’t gain much weight. She did get back to her birthweight which is good, but she plateaued around her birthweight for several days most of this week. The good thing is they were able to increase her milk feeds from 3ml to 9ml [per 3 hrs]. That was a nice size jump and should help her grow. They performed a heart test which consisted of an ‘ekg and an echo.’ They do this test periodically to check to see if her ‘PDA’ closed. [lots of acronyms] A closed PDA is good, an open PDA can cause bad exchanges between the heart, blood, and lungs. Victoria’s PDA was slightly open but not enough to require treatment. This was not a bad test outcome at all, yet not the perfect outcome either. FYI, an open PDA is quite common in preemies and is treatable, but the treatment is not easy-breezy. The conclusion was to check again in a couple of weeks or check sooner if she revealed any signs indicating another test is needed.
Most of this week Victoria’s blood gas tests (lung function tests) were high but stable. They run these once a day. Her CO2 levels were in the 60’s which is high but somewhat acceptable. Because her ventilator settings were already fairly strong, they do not want to push her breathing support any higher to bring down the CO2 count. Logically, they chose not to wean her any from the vent because the blood gas levels did not improve. It’s uneasy seeing her on the big machine but I know she needs it right now. I await the day when she gets off the breathing machines in good health.
During the early part of the week she started to have some unfavorable symptoms, and the symptoms worsened for a few days. She was not urinating much which is a kidney concern, she had a very elevated heart rate ranging from 180-210 bpm, her blood pressure was getting borderline reads on both sides, and her white blood cell (wbc) count was high. The medical team had a tad bit of concern in their demeanor and usually they have been ‘not too alarmed’ by most of her symptoms in the past couple of weeks. This was making me nervous. They did an ultrasound on her kidneys to make sure it was looking & functioning ok and it came back revealing no issue. Thank God. The kidney issues were ruled out, but the overall problem still existed. The doctors suspected she was developing an infection, though they weren't able to grow a 'bacterial culture' from her blood. The medical team began to treat her with dopamine for the urine issue, and antibiotics for the wbc count issue and near the end of the week, her vitals began to normalize and she was back to normal digestion and excretion…. Thankfully, the team did not have to stop her milk feeds which they were getting ready halt if she had gotten any worse. We Bless God. Another battle won.
We are thankful that Miss Victoria made it past week three.
==================================================================
 |
| Minutes after birth. Eyes open, tube in, breathing with assistance. PRAISE GOD! |
 |
| Mom gets to see baby Victoria before NICU. |
 |
| Day 1 NICU: Heartbreaking to see, yet thankful for the care. 1lb 3oz. 550 grams. |
 |
| Day 2: Blue light photo therapy jaundice treatment. Cool shades on for eye protection! |
 |
| Week 3 hanging onto God's mercy. |
Week 3 sleep kicking video.
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