Hayley's Preemie Story: Part 4 - Life in the NICU

 Life in the NICU is like a roller coaster. So many ups and downs. Some days things will be smooth sailing, just waiting for her to grow enough to go home, celebrating victories and milestones met, other days are full of setbacks, scary moments, lots of changes, or just no progress. We were told from the beginning to not expect her to go home until around her due date, so to prepare for a long NICU stay (she was due January 4th, but born October 9, so we had an almost 3 month stay ahead). They told us there were several milestones she had to meet before they would release her: the biggest ones were that she had to be in an open crib and be able to keep her body temperature up, she had to be able to get all of her nutrients via bottle (as opposed to feeding tube), she had to be able to lay in a flat bed with the head down, and she had to go 24 hours without a bradycardia episode (or just "episode" as they called in in the NICU; basically a heart rate drop where they literally "forget" to breathe). We were a long ways from any of that, so it was going to be awhile.

She was in an incubator that would sense her temperature and adjust based on her temperature. She was on a feeding tube so they could give her my milk, she was on caffeine to help to "remind" her to breathe, she was given fat to help her grow and gain weight, and she was on an IV that was basically a "multivitamin". When she was 7 days old they did a cranial ultrasound to check for a brain bleed (protocol for preemies since they are at high risk for a brain bleed). Praise God, no brain bleeds for her. By this point she was on a low flow cannula, which means she was getting the least help possible to help her breathe, just a couple of steps from being independent from breathing help.

Her daddy got to hold her for the first time when she was 6 days old. He did skin to skin with her. She was soooo tiny that her little hands would grab handfuls of his chest hair and pull it haha. It was a special moment for him and it was so precious seeing that tiny little baby enveloped in his large, strong, protective hands. It is definitely enough to melt a momma's heart. There's nothing like seeing the love of your life holding your baby, his daughter, for the very first time.

At one week old we had her very first professional photos taken by Capturing Hopes, a photography organization that takes photos of kids and babies in the hospital for free for their families. It is a wonderful organization and we were so blessed by their photos they took of our daughter. 

When she was close to two weeks old, Hayley finally surpassed her birth weight. On October 27, Hayley had her very first setback. It was a very scary morning that started with the hospital calling me at home (you know something bad is happening when the hospital calls you) to inform me that they had to make a lot of changes so that I wouldn't be alarmed to find all of that when I got there. She started having a lot more bradycardia episodes, had to be stimulated a lot (usually they tried to let them bring their heart rate up themselves, and if they didn't they would barely touch their back or something to stimulate them and their heart rate would come back up), they had to put her on a CPAP machine instead of a nasal cannula, she had to have an IV put in (they had just pulled out her central line a couple of days before), she needed an antibiotic and a blood transfusion (it is common for preemies to need blood transfusions because they can't regenerate their own red blood cells yet, and they need a lot of blood tests in the NICU, so they can get anemic). It was very scary watching her heart rate drop like a sled on the monitor and watching her turn almost gray while they had to actually pick her up to get her heart rate back up. Thankfully the blood transfusion did a world of good for her and she started doing much better after several hours. She had to stay on the CPAP for about a week after that before she could breathe well enough to go back on the nasal cannula, but this time she was on the high flow, which took a long time to get her off of it.

Our very first family portrait, taken by Capturing Hopes

At one month old Hayley graduated from NICU 1 (the more critical end of the NICU) to NICU 2. She also was put in clothes for the very first time (they have to be able to hold their body temperature up a little to wear clothes). She looked so cute and teeny in the little preemie outfit they put her on, and it was huge on her! They told us that she tried to crawl out of them 3 times the night they put them on her and she was dubbed a "wild child" lol. At this point she was on the verge of 2lb. I actually had a meltdown that night because she had been hovering close to 2lb for 3 days and hadn't gained anything yet (like I said, the NICU is full of ups and downs). Thankfully she hit 2lb and 2 oz the next night! 

Meanwhile, Hayley had to start getting regular check-ups on her eyes. I can't remember but I think it was 2 weeks to a month when they started doing that. She was diagnosed pretty early on with Stage 1 ROP (the most mild stage of Retinopathy of Prematurity, an eye condition that preemies can get that can cause leaky vessels to develop in their eyes which can cause scarring and detached retina in extreme cases. They regularly check their eyes in an attempt to treat any they see early on to save their vision). Because Hayley had stage 1, she had to be rechecked every two weeks until 3 months after going home when the eye doctor finally cleared her of it. 

She tried a bottle for the very first time on November 14, at just over a month old. It didn't last long but it was a start. It takes awhile for a micro preemie (a baby born less than 700-800 grams, Hayley was around 620 grams) to learn to suck, swallow, and breathe all at the same time. 

By November 22, she had been drinking from a bottle well for 3 days (eating over half of her feeding via bottle once a day) and had reached 2lb 9oz! We were getting there! There was still a long ways to go but we were getting there!                                                                                                                                         Thanksgiving came and went in the NICU. She was moved into an open crib, which was one big milestone down. We were dealing with a lot of setbacks with her bottle feeding, though, since she had reflux really bad (common in preemies, generally they outgrow it as they get bigger). She had to be on continuous feeds for awhile to help it, and we were finally able to get her put on prevacid and added cereal to her milk to help the reflux. Her progression with bottle feeding improved after that. 

A week or so into December Hayley had her repeat ultrasound which showed great results. She also had an echo cardiogram which showed a normal heart. She had her 2 month vaccines administered at 2 months old, which caused a slight setback, but it was a short-lived one.  She was slowly working her way along with growing at this point and she reached 4 lbs on December 15. By now we were hoping she could come home by Christmas, but she didn't meet her milestones in time. 

On Christmas Day, she surprised us by taking her cannula off of herself and she no longer needed it! It was so wonderful to finally see her face without stickers all over it! It was a Christmas spent in the NICU, but time cuddling my baby girl was more Christmas present than anything else I could have gotten. The next day she pulled out her feeding tube, and they decided to try her without it (meaning she takes all of her nutrients via bottle, she had to drink a certain amount to stay off of the feeding tube) and she did great! So in two days' time, she reached two major milestones! No more cannula and no more feeding tube!

She met the last one a day before New Year's Eve, so she was finally able to discharged on New Year's Eve, 5 days before her due date! Before she could come home they had to do a car seat test with her where she had to sit in the car seat for an hour with the monitors on. She had to not have any bradycardia episodes while in the car seat or she would have had to come home in a flat car seat bed. She passed it with flying colors! And they did a hearing test the day she was discharged which she also passed with flying colors!

While we were waiting for them to discharge us (an 84 day stay requires a lot of prep and paperwork, meds from the pharmacy, and a lot of instructions, AND we were waiting on her last eye exam before we left), the nurse asked us how we'd like a wireless baby and took all of her leads off. The silence was so scary after 3 months of relying on the monitor to see how she was doing, but it was nice at the same time to have a baby with no wires at all. Leaving the NICU was the most amazing feeling after practically living there for three months! 

Finally we were discharged and put her in her car seat for the first time. It felt so amazing bringing her home. We spent New Year's Eve snuggling under blankets in warm sleepers at home <3 It was the most amazing New Year's Eve and was the best way ever to ring in the New Year! 

Looking back, our daughter still amazes me! Everything she went through so early in her life just shows what a little miracle and strong little fighter she is! We love her so much and couldn't imagine life without her! I know that not every story of micro preemies born so early end this well, we are very blessed and very thankful for our happy, healthy little three year old. 

Our Beautiful 3 Year Old

Hayley's Preemie Story: Part 3 - A Preemie and Preeclampsia

On Wednesday October 9, 2013, at 27 weeks 4 days pregnant I was transferred to a bigger hospital with a NICU because I was diagnosed with severe preeclampsia and we were about to have a preemie. My husband beat us to the hospital and was there waiting when we arrived in the ambulance. I was wheeled into a big labor and delivery room where doctors and nurses immediately surrounded me, putting things in my IV, checking my vitals, and coming in and out. They had my daughter on the fetal monitor and listened closely to her because her heart rate had begun dropping regularly. They were concerned that she was in distress. They attempted to have me lay on my left side with an oxygen mask on to see if it would help her because they hoped to keep her in a couple more days so that I could get all of my steroid injections in to help her lungs develop better.

Meanwhile, they did an ultrasound of her to see how she was doing on there. The ultrasound revealed that she was measuring 4 weeks (23 weeks) behind where she should have been (IUGR, intrauterine growth restriction) and that the placenta was not supplying her with nutrients consistently -- there were consistent lapses in blood flow to the umbilical cord. They did say, though, that she was practicing breathing. Knowing she'd be a preemie, that was good news that her lungs were functioning.

Her first photo, taken moments after birth.
The plastic bag was to keep her body temperature up

After a couple of hours they decided to take her out because her heartrate drops were not improving. They wheeled me into the operating room and did a spinal. The whole time they were cutting me open I was praying for her, not only that she would survive, but THRIVE (because there is a big difference between surviving and thriving, as a brain dead vegetable survives. My mom later told me that our Pastor's wife was talking to her, encouraging her and used that SAME word over our daughter. God's confirmation is always amazing!). She was born at 9:02 PM weighing just 1lb 5.9 oz and 11.4 inches long and thus began the longest 10 minutes or so of my life. There was no cry, just silence. It was a scary silence, but I felt a peace deep in my heart that she would be OK and that God had this! Finally  we heard them say "Dad, do you want to see her?" A flood of relief flowed through me. My husband cut the umbilical cord and, after a few minutes, they brought her over to me all wrapped up with a little yellow hat on her head. They lifted her down to me so that I could see all the hair on her head and give her a little kiss. Then she was wheeled off to the NICU.

I was put on 24 hours of magnesium treatment which meant I had to stay put and couldn't go see our daughter. They had trouble controlling my blood pressure, so I stayed in the hospital until that Saturday (our daughter was born on Wednesday) when they finally released me. While I was there I visited our daughter as frequently as I could. She was doing very well for being born so early and being so tiny. She only had to be on the ventilator for a few hours before they took her off of it, and she was only on a nasal cannula to help her breathe, which is amazing for being so tiny and so early! She seemed to be sailing along in the NICU. 

When she was 2 days old I got to hold her for the very first time. She was around 1lb 4oz at this point (she lost weight like all babies do immediately after birth) and had all sorts of tubes and wires on her, including a central line so that she didn't have to be poked and prodded so much. I did skin to skin with her with several blankets on top of her to keep her body temperature up. It was an amazing moment getting to hold our daughter for the very first time. She was so tiny and looked like a little pixie (she didn't look as much like a baby because she didn't have any fat on her yet and was covered in lanugo--a fine hair babies have on them in the womb until they get enough body fat to keep their temperature up). Our skin to skin session only lasted about 20 minutes because her body temperature started dropping too low, but it was 20 minutes of heaven. 

I was released on Saturday afternoon and that night I got a really bad headache as I was laying in bed sleeping. I woke my husband and told him we needed to go to the hospital, I just knew my blood pressure was up. When we got to the ER they did a blood pressure check. The result: 210/130! My blood pressure was dangerously high and I was in danger of having a seizure or stroke! I was admitted immediately and they put me on another 24 hours of magnesium treatment (if you've never been through a magnesium treatment, it feels like you have a high fever. You are hot and can't focus on anything, even the TV. And you feel all swelled and can't get up out of bed). On Sunday afternoon I was released again, this time on blood pressure medicine and instruction to follow up with my OB on my blood pressure over the next couple of weeks.