*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 |
