*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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| Week 4: First Family Photo on first day of Kangaroo Care. |
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| Week 4: Mom and daughter time in day 1 of Kangaroo Care. |
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| Week 5: Family Selfie! |
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| Week 5: Gaining weight, opening eyes, very alert, looking livelier. |
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| Week 5: Victoria grabbing Leyda's finger. |
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| Week 5: Grabbing mom's finger. |
Week 5: Victoria showing some facial expressions.
