*Contact Leyda and Brian at: BrianAndLeyda@yahoo.com | Para español, haga clic aquí.
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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.
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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.
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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.
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| Minutes after birth. Eyes open, tube in, breathing with assistance. PRAISE GOD! |
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| Mom gets to see baby Victoria before NICU. |
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| Day 1 NICU: Heartbreaking to see, yet thankful for the care. 1lb 3oz. 550 grams. |
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| Day 2: Blue light photo therapy jaundice treatment. Cool shades on for eye protection! |
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| Week 3 hanging onto God's mercy. |
Week 3 sleep kicking video.
