Monday, July 11, 2011

Bringing Aaron Home

Yesterday we knew we were getting close to the going home date because we were doing all of the "right before you go home" stuff. David and I went to training for Aaron's sleep monitor and infant CPR. We watched a video about safe sleeping and another done by one of the neonatologists discussing what to expect after discharge. Aaron was given his car seat test, and we made sure we were signed up for the developmental program that the hospital offers.

While I was on my way back to the hospital last night, David's mom called me from there excited that Aaron was possibly going home the next day. The nurse hadn't actually said that to me, so I talked to her as soon as I arrived! She said that she couldn't promise anything but that she didn't know what else the doctors would be looking for. Of course, Aaron wanted his last night to be memorable, so he had a visit from some friends--Melissa and Kelly--and he nursed for the first time (a big deal for a little guy).
This morning, as Isaac and I were getting ready to go to the hospital, I got a call from Aaron's nurse telling me that he had been discharged! I took a little extra time at home to put away all of his clothes so that I wouldn't have to worry about it later. I got to the hospital just in time for him to eat, so the lactation consultant came to work with us. She said he was a champ and doing a perfect job--another thing to praise God for!

Between last night and this morning, several of Aaron's caregivers came by to see him. Dr. Ethington, his admitting physician, came by to talk to me. He expressed how happy he was to see Aaron ready to go home so quickly. He told me that Aaron was always his first stop of the morning, and he would spend 30-45 minutes just going over his orders for the day. He was so thrilled that Aaron had overcome so much! He also expressed his desire for us to be involved in the clinic offered by the hospital to help monitor Aaron's development. He said he had no doubt Aaron would thrive because of all of the family and friend support he has.

One of Aaron's primary nurses also stopped by to see him. Ashley had him the first four nights of his life as well as an additional three days later during his stay. She told us that she had come in earlier this morning to cuddle with Aaron and she had just held him and cried. Several times over the past four weeks, the faith and trust she saw in us seemed to minister to her. I pray that one day we will either be able to lead her to Christ or hear that she began to trust Him as her Saviour!

After all of his caregiver visits, David and I just had to be shown how to mix his milk with the bit of formula he gets and how to measure and mix his vitamins. Then we loaded everything up and left. I just cried while walking down the hallway. I cried because I was happy. I cried because I was nervous. I cried because I am thankful. I cried because I feel so blessed! And I know I will continue to cry for various reasons. I will cry when I remember that my baby was born dead and that his apgar score was a 0 at birth and a 2 five minutes later. (If you are unfamiliar with APGAR scores, you can see a chart here: I will cry when I remember the paralyzed state they put him in. I will cry when I see the pictures of his first few days of life. I will cry when I see the progression visible in his pictures after those first few days. I will cry when I remember you, your prayers, your support, your love. I will cry when I remember that I chose to trust God without knowing the outcome; I will cry when I remember that God was in control of the whole situation and that He used (and is using) it to show Himself to thousands of people. And I hope that I get the chance to cry when hearing that Aaron's testimony is what led many to Christ. Tears of fear, joy, weariness, relief, trust, faith.

So we are home now. Aaron still has a lot of milestones to meet, and I have no doubt that he will meet them. God is in complete control, and I trust Him to complete His work in Aaron, in me, in you, in his care staff, and in the many others impacted by this situation. God is so, so good! Please continue to pray! I will continue to post updates on Aaron's health, so feel free to subscribe to my blog. I will also be posting some of the lessons God has taught me throughout this process; I pray that they will minister to you as well.

Saturday, July 09, 2011

July 9, 2011

Between today and yesterday, there has been a LOT of talk about preparing to go home. At home, we have washed all the tiny clothes, washed and put together all the baby gear, and begun to deep clean the house. There is still quite a bit to do, so the next few days will be extremely busy! Anyone want to come help me clean???

Yesterday, I walked into Aaron's room as Dr. Stein was doing his rounds. He came in Aaron's room and said, "Who is this baby? Didn't he just make me lose all of my hair a couple of weeks ago?" (Dr. Stein is completely bald.) He apologized that he didn't have a diagnosis for Aaron, and he said that something could show itself in the future, though we are praying for complete health! He was extremely impressed with the way Aaron has been eating and growing!

He has his hearing screen yesterday, and he passed that. We figured that he would because it is easy to see that he responds to sounds. He has had a few apnea episodes over the past few days, so they did a 12-hour sleep study on him yesterday afternoon through early this morning. This is a pneumogram. This test picks up all of his respirations more clearly than the alarms he is attached to. The test found that the reason for his episodes is due to his immature central nervous system, and Dr. Hornick assured me that he would outgrow that. He will, however, go home on a sleep monitor; this records all of his breathing on a cd that the respiratory therapist can review to see how he is progressing. David and I are being trained on using the monitor tomorrow, and we will also be trained in infant CPR. We are, of course, praying that we never have to use CPR on him. The monitor will give us peace of mind and will probably help us sleep when we first bring Aaron home because we can rest assured that if he stops breathing for any reason, the alarm will sound and wake us up.

Dr. Hornick was the doctor present at his birth. She is the one who resuscitated him. As she spoke with me about how well he is doing, she turned red and had tears in her eyes. She knows even more than I do what an amazing miracle Aaron is. I thanked her (as I do every time I see her--how can I not?), and she responded that babies like Aaron are such an encouragement to all of the amazing NICU staff!
Aaron had his first photo shoot today, and the photographer said that he did a great job! He will be getting his car seat test within a couple of days; he is monitored while sitting in his car seat for two hours to be sure he is able to tolerate the position.

Aaron's weight today is 5 pounds 2 1/2 ounces. The nurses keep commenting how impressed they are with the way he is eating.

As I spoke with Aaron's nurse (Gretchen) tonight, she was giving me advice on choosing a doctor for Aaron and using the Help Me Grow program. I shared with her what Dr. Hornick had said earlier, and she said she was on the night that Aaron was born. She was there when Dr. Hornick and the two nurses left for Aaron's delivery. She spoke with one of the nurses several times over the next couple of days, and she said there was so little hope that Aaron would survive. He was one of the tough NICU cases, one that people expected would be lost. I am so thankful that God had other plans! Gretchen shared things about Aaron's birth that I had not yet heard. She told me the condition he was in when he left my hospital. She used terms I had not yet heard, even though I knew what the case was; she actually said he was dead at birth. What an extremely sobering thought.

All I can think is: "You deserve the glory and the honor. Lord, we lift our hands in worship as we lift Your holy name. You are great! You do miracles! So great! There is no one else like You, no one else like You! "

Please pray that Aaron is able to tolerate his car seat test. Pray that his central nervous system matures quickly so that he is able to outgrow the apnea episodes. Pray for his homecoming and continued life and health! Thank you!

Thursday, July 07, 2011

July 7, 2011

The first thing Isaac noticed when we walked into Aaron's room today was that Aaron was (seemingly) picking his nose...gotta love boys!

Aaron weighed in at 5 pounds, 1/2 ounce today! Aaron dealt well with his circumcision, and he had no apnea spells today!
While Isaac was at the hospital today, he enjoyed staring at his brother, touching his hands and head, and giving him kisses. He also wanted to help feed him, but I am not sure Aaron is quite ready for that!

I will be taking the car seat in tomorrow so that it is there whenever they need to do his tolerance test. He is also going to be having his first official photo shoot in the next couple of days; we have a few very cute and tiny outfits to choose from!

Other than that, Aaron has had a fairly quiet day, and that is precisely what we like to hear at this point! We are praying that he doesn't have any more apnea spells, that he continues growing, and that any other testing that is done comes back showing he is disease and infection free! What a beautiful miracle whose testimony has already touched many! Thank You, God, for bringing healing to Aaron's body!

Wednesday, July 06, 2011

July 6, 2011

Notice anything different?

How about now?

Well, in case you didn't, I will just tell you...I don't have a feeding tube anymore!!!! Today is only the second time my mommy has seen my entire face, and it's the first time my daddy has. The other time was for a split second when I was switched from the oscillator to the ventilator. In case you are wondering, my mommy thinks I am SUPER CUTE!!!

Aaron is now taking two ounces of milk every four hours by bottle. He eats it pretty fast, too. This means he is using up a lot more energy. Because of that, he has had a couple of episodes in which he holds his breath or forgets to breathe (apnea), and this causes his heart rate to drop. He quickly recovers each time. This is a common problem in preemies because they have an immature central nervous system. The nurses and doctors will monitor Aaron, and he will not be sent home until he goes through two full days without an episode. The nurse warned me that Aaron could possibly have to use his feeding tube again because he got his Hep B vaccine today and he is being circumcised later this week; she said that these things sometimes make preemies go backwards a bit, though they usually jump right back to where they were within a couple of days.

Aaron weighs 4 pounds, 14 1/2 ounces today! He is a growing boy! His nurse told me that as long as he keeps feeding well and growing, he should be going home soon. The first thing I did when I got home tonight was get the baby gear out to wash it! This is certainly exciting news! Now to find a larger car....

As you continue praying for Aaron, please pray that his central nervous system matures and that he is able to overcome the apnea episodes. Please also pray that he is able to handle some of the things he will be going through in the next few days. Pray for David, Isaac and me as well; this entire experience has been somewhat stressful on our family with the coming and going all the time. God has certainly been faithful throughout this process, and we are excited to see Him complete this work in Aaron and in us!

Tuesday, July 05, 2011

July 5, 2011

Today I had my own personal photographer with me (aka, Isaac), so I got some pictures of me and Aaron!

The big news today is that Aaron took four of his feedings in a row with a bottle! This is a big deal because bottle feeding is a lot of work for him! He also went from taking it in about 40 minutes to taking it in about 20-25 minutes. His nurse was very impressed!
He has also been more consistent in waking up when it's time for him to eat--another great sign! One problem Aaron had today was that he forgot to breathe for a moment; his alarms began ringing immediately. He quickly recovered, but this momma was scared! The nurse assured me that this happens often with preemies; it's just part of what Aaron needs to learn to do! Fortunately, this has not been an ongoing problem.

Isaac was so hyper today, so he lent his antics to the camera...and we certainly captured them!

We are praying that Aaron is able to come home soon, and in order to prepare for his arrival we bought Isaac new bedroom furniture. We got it all put together today, and he loves it!!!!

The doctor did tell me today that some test results had come back on Aaron's thyroid as well as his brain and enzymes; all of the results were good! Praise God! We continue to pray that further testing goes well!

We are focusing our prayers right now on the tests. We are also praying that Aaron continues improving in his eating and that he has no further episodes in which he forgets to breathe. We are praying for complete health and that Aaron is ready to come home soon!

Monday, July 04, 2011

Happy 4th of July=Happy Birthday, Aaron!

It has been a busy weekend! Papa and Mimi were in town, we went Granny's house for a bbq, and we watched the fireworks! We also made a special trip to IKEA to get Isaac's new bedroom furniture so that we can start getting the house ready for Aaron!

Today is Aaron's three week birthday! Three weeks ago, I definitely experienced some moments where I wasn't sure we would still have him here at this point, but God has brought healing into his body, and he continues growing and improving! He is above his birth weight now, and instead of all the fluid (which he lost), he has a positive weight gain; he is 4 pounds, 13 1/4 ounces!

When I went to the hospital yesterday, the nurse told me that Aaron had taken two full feedings with his bottle, one the night before and one that morning. I was there during two of his later feedings, and I was able to bottlefeed him, although he only took about half of each feed. It's fairly easy to see when he gets too tired. At one point, he actually stopped breathing; all of his alarms were going off! Fortunately, one of the nurses had warned me that this might happen a few days before, so I was prepared and knew precisely what to do to remind him that we like to encourage breathing :)
Tonight when I went to see him, I was able to give him a bath again. I was much more confident tonight than the first time, but apparently each nurse has a specific way she wants you to do things because tonight's nurse kept telling me to do things a different way than the one from a few days ago. It's really like learning to be a mom all over again! Some things have to be done differently because Aaron is a preemie, so lots of direction is appreciated, even if it does occasionally make me feel inept:(

Cuddle time is my favorite time of the day. I get to talk to Aaron, sing to him, pray for him. He is a precious gift!

As you continue to pray, please pray that his feeding keeps improving. Also, please pray that no diseases or disorders of any kind are found and that Aaron continues to develop as he should!

Some of you have asked about the other baby I asked you to pray for. Unfortunately, I will be unable to follow-up on this due to privacy issues, but I do know that there are about 57 babies in the unit right now, some more needy and critical than others, and they and their parents could all use your prayers. We serve a BIG God, and He is more than able to touch each and every one of these babies and families. It is my prayer that I will be a vocal support to the parents that I meet and that I will speak boldly about God and His great love for them! Perhaps that is part of the reason Aaron is there; I want to walk His paths! Thank you for walking with me!

Saturday, July 02, 2011

July 2, 2o11

Aaron is up to 4 pounds, 10 ounces today! The nurses started to fortify his milk with a bit of formula to increase the calorie count; this is normal for a preemie. Early this morning, Aaron took over half of one of his feeds with a bottle; this is a big improvement from just a couple of days ago. The nurses still feel like he tires out too much to try at every feeding. During one of his afternoon feedings, we tried to feed him the "natural" way while he was taking his milk through his feeding tube; he really did quite well. He is definitely associating sucking with a full belly, and that is a great sign! I got to cuddle with him lots today, and he spent some time cuddling with Papa and Mimi too!

I took Isaac to the store with me tonight, and there were numerous pregnant women walking around. All I could think is that I'm still supposed to be pregnant...34 weeks with six more to go! I was saddened for a moment. I have this tremendous miracle the hospital. It is extremely difficult to feel like a family, to feel like a mother, with my baby at the hospital.

On the way home, I was thinking that I am so grateful to have Aaron and to have experienced God the way that I have over the past two and a half weeks. I am thankful that He chose this way to show me His power and His love. I am also thankful to have seen the body of Christ come together on behalf of this sweet baby. Regardless of denominational affiliation and other things that can sometimes bring separation, I have seen the people of God join together in faith, encouraging one another daily, being who Christ tells us to be! Sometimes it can be difficult to see Christ in the church...sad, but often true. There are so many who claim to belong to Christ, but their lifestyles/actions/etc... suggest otherwise. It has been beautiful to see the Church look like Christ over the past couple of weeks. God is still on His throne, and He is still worthy of our praise and adoration...not just because He healed Aaron (although that is certainly deserving!) but simply because He is! May He be forever praised and lifted high!