Mr. Personality

It has been a while since I have posted. Mostly because I have been enjoying my life with Jayden. He is already 8 months old, 6 months adjusted. I fall more and more in love with him every minute of every day. He is still a peanut, but he is growing so his doctor isn't too concerned. We do have an appointment with an ENT at the beginning of May. He has periods of loud breathing which seem to come from his throat. His doctor said it is probably something called Tracheomalacia. He only said this after I insisted on a referral to the ENT. From Dr. Google, I have suspected tracheomalacia, but I want to make sure and talk to a specialist in the field. 
Over the last 8 months, Jayden has emerged as Mr. Personality. He is one of the happiest, easy going babies I have ever seen. He smiles with his whole face and it could melt even the coldest of hearts. We have created a monster though. An animal loving monster. He absolutely LOVES all of the animals we have. Charlie (our big dog) and him seem to have the most fun together. Charlie lets Jayden do whatever he wants to him. We are working on trying to teach Jayden "nice touches", but he is 8 months old. Jayden finds it hilarious when Charlie gives him kisses, which is often since Charlie is a lab and loves to lick.
The curiosity and wonder I see in Jayden's eyes every moment of the day is amazing to me. He is literally seeing things for the first time. He examines everything (and then usually tries to put it in his mouth!) with excitement. As a teacher, scientist, and now a mother, I strive to keep that inquisitive nature alive throughout his entire life. 
As for me, I still feel the guilt every day. I tell my son that I am sorry every day. There is no timetable for healing. Exercise has been helping greatly, as has volunteering for the Pre-Eclampsia foundation's Denver Promise Walk. It allows me to feel like I am doing something to try and prevent this from happening again should we decide to have more children. I hope that one day there will be better treatments for this complication of pregnancy so that delivering the child prematurely will not be the best option to save both the mother and the child. I don't ever want to feel as helpless and alone as I did last August. 

My Journey to Jayden

Over the last 3 months, I have been trying to identify and name many of the plethora of feelings I have had surrounding the conception, pregnancy, and birth of Jayden. You see, my journey to Jayden wasn't easy. It wasn't traditional. At times I felt it wasn't fair. I have had a hard time articulating what I have been feeling until someone on one of the preemie parenting boards stated it. Robbed. I feel robbed of the joy of child birth. I didn't have a birth plan. I didn't care how he was born (vaginally or c-section), just as long as he was healthy. His birth was terrifying. We didn't know how sick he would be. If he would be breathing on his own. We didn't know if he would need a breathing tube. We didn't know how small he would be. I feel robbed of the experience of being with my newborn in the hospital. Of being happy with my child in my arms.  I feel robbed of the experience of being wheeled out of the hospital with my baby in my arms like everyone else got to. 
I feel robbed of the excitement of conception and the joy of pregnancy. Jayden was conceived out of pure love and hope for a family, but also of science. His conception was clinical, yet necessary for us to have a family. There was no trip to the mountains, or a romantic evening where he was conceived. My neighbors growing up had a picture of the room in which their oldest was conceived (at least that is the story I was told behind the picture). I find myself a bit jealous of that picture and of my friends who conceived their children so easily or at least without the struggles we had.  Jayden was conceived in a sterile room, me in a paper gown, Jay in a sterile paper jump suit. I had to lay flat on my back for 3 days after the embryo transfer. I had to wait 2 weeks to find out if it even worked. There was no taking a test on a whim to because I thought I might be late.  Every pain, every abnormal feeling, whether it was a regular side effect of pregnancy, was cause for great anxiety. I knew if I lost both of my children, I couldn't just wait a few months and conceive another. After we lost his twin, the anxiety became even greater. I couldn't really enjoy being pregnant because I was so afraid to lose him. At 20 weeks we had a scare with my blood pressure, it turned out to be an ear infection. At 24 weeks we had another scare, which turned out to be severe round ligament pain and I was put on modified bed rest. So all I could do was worry. At 31 weeks my blood pressure spiked again, and at 32 weeks and 4 days I gave birth to my son. 
I feel robbed of the experiences that the 3rd trimester brings. I had just started to feel like I was looking pregnant. I am tall and have a large torso, plus I was overweight to start so I didn't show as quickly or as much as other people I know. No stranger ever asked me when I was due.  Some women will say things like "at least you didn't have to go through the last few weeks, you avoided that discomfort". What I wouldn't give to have had those extra weeks to allow my son to grow inside of me. I would endure all the discomfort and pain in the world if it meant my child didn't have to suffer those first few weeks of his life.
Many people have said to me, "look on the bright side, it could have been worse". NO SHIT.  When I found out that I would most likely be delivering early I read all I could about issues that preemies could have. Especially those born around 31 to 32 weeks. He could have had to have a breathing tube. He could have had a PDA, CLD, IVF, ROP, and many more 3 and 4 letter acronyms for very scary things.  I know that it could have been worse. I thank God every day that it wasn't.  I thank God for the double miracle that is my son. 
I am entitled to the feelings I have. Whether anyone thinks I should be feeling them or not. By keeping my feelings inside, I cannot begin to heal. I have learned that the hard way. I may put on a smile for the rest of the world, but I am still trying to put myself back together. I am still trying to figure out who I am after all of this. I am still trying to come to terms with the guilt I have over causing him to be born early.  
My journey to Jayden has not been an easy one. It has been paved with tears, with fear, with anxiety.  But the new stones I am laying down are ones of hope, healing, and undying love for my son.

No Place Like Home

For the longest time, I felt like something was missing. I didn't feel complete. Now, like magic, I feel whole. Jayden has been home for almost 3 weeks. At the lowest points of his NICU stay, I didn't believe he would ever come home. The weekend before he was released, Jay and I hit a low point. We were getting so frustrated with his lack of progress, but even more so with the doctors telling us there wasn't anything they could do. So I took matters into my own hands. I made them put him on 100% formula. Until then he was getting breast milk fortified to 24 calories. I am taking Celexa which is an antidepressant. Some research has shown that it can cause drowsiness in infants. I kept bringing this up to the doctors and they told me it wasn't affecting him. I know preemies are sleepy babies, but we were getting to him being full term and he was still not waking up for most feedings and not finishing the feedings he was being given by bottle. He was also having a lot of gas and reflux issues. If he was at home, I would have considered doing diet eliminations in order to determine if what I was eating was causing the digestion issues, but we were coming up on 6 weeks in the NICU and we wanted our baby home. That combined with the reports of Celexa, I told them to stop the breast milk. Within 36 hours I had a completely different baby. He was finishing more than 50 % of his feedings by bottle (they were only giving him the bottle ever other feeding). It all depended on which nurse was taking care of him as to how much they pushed him to finish a feeding. On Monday September 17th, the Neonatal Nurse Practitioner decided to offer him the bottle at every feeding (something I had been asking for a while). The thought was that even though he appeared to be sleepy, he would take the bottle if the nurse offered it (another thing I had been telling them). They also upped his calories to 24 (they had dropped it to 22 since he was gaining weight so well). This allowed him to have a range of volume he could take for it to be considered a full feeding. With those changes, he took everything by bottle and on Tuesday afternoon his feeding tube was removed. He was also taken for his circumcision (a tell tale sign they would be releasing him soon).  I went that night for his 8 pm feeding and the NICU was packed with babies. The week before Jayden had been the only baby there for a few days. I joked with the nurse that we would gladly give up our bed since they seemed to have a full house. Usually when I would make comments like that, the nurses would give me the standard "he will go home when he is ready". This time she said that it could probably be arranged. I asked if he could go home tomorrow, she said she would talk to them during shift change in the morning. Let's just say I did not really sleep Tuesday night. When I arrived on Wednesday morning (I specifically arrived before rounds) I asked again if he could go home. The nurse told me she would bring it up and push for it at rounds. The night before Jayden had deemed himself ready to be without oxygen by pulling the entire canula, stickers and all, off of his face and maintaining his sats while feeding (the only reason he needed oxygen). The doctor agreed that he could go home, and on Wednesday, September 19th, our beautiful baby boy came home. I am no longer missing a piece of myself. 

 

One Month Old

Today my sweet baby boy is a month old. He is still not home. He is growing like a weed. 6 lbs 11 oz. Most of his preemie stuff doesn't fit him anymore. Some on the newborn stuff fits great, others are still huge. He is taking full bottles every other feeding. They are gavaging him the other feedings. I asked when they would try the other feedings by bottle and they said it was up to him.They have been testing him without oxygen and he does well until it is time to eat. Then he starts to desat. I have asked them if when he goes home and is still on oxygen do we need it all the time or just with feeding. They said probably all the time so we don't forget to put it on him. I think that is ridiculous.  If he only needs it for eating, then he should only have it for feeding.  A positive sign is at 5 pm today he woke up and demanded food. I hope he does this from now on. I need him home. A piece of me is missing. I get up every morning excited to go and see him and I leave the hospital fighting back tears because I hate that he is still there. They keep telling me to wait for the light to go on. I have been waiting for a month now. I know he is still little. I know he isn't supposed to be here yet. BUT HE IS AND HE IS NOT WITH HIS MOM!
I am so tired when I get home. I feel guilty that the rest of my household isn't getting the attention it deserves, but honestly all my energy goes towards being strong for Jayden and that is the way it will be for a while. I know eventually, when he gets home, I will get back into a routine and taking care of other things around here. Right now all my strength goes to him and to not lose it completely ( I am almost there).

Did You Know...

* Charles Darwin, Sir Isaac Newton, and Albert Einstein were all preemies? As was Mark Twain. I wonder who Jayden will be and what his impact on this world will be.  Whoever he is and what ever he does I will love him unconditionally.
* Preemies are at much higher risk for RSV, especially during the winter months.
* There have been over 750 cases of whooping cough in Colorado so far this year. Compared to the yearly average of 150. I am asking everyone who comes in prolonged contact with Jayden to have had the pertussis vaccine. As a preemie he is at a much greater risk to contract this preventable disease. Babies do not get their vaccines until 8 weeks.

Jayden has made great progress this week. On Monday he finished his first bottle. Since then he has worked his way up to getting bottles every other feeding. The last day or so he has finished most of those. Sometimes he is too sleepy to get one, but it depends on the nurse as to whether they will attempt to give him a bottle if he is not wide awake. One of my favorite nurses gives it to him anyways and even though he is apparently sleepy, he actually eats and finishes it. I also had to fight to get them to let me feed him while not being swaddled. I found that if he was swaddled, he would completely fall asleep and not finish his bottle. They say he needs to be swaddled to keep him coordinated enough to suck, swallow, and breath. He does just fine not swaddled AND he finishes his bottle.
The NICU nurses are amazing, but each nurse has a different way of doing things and once I get used to one way of doing things, another nurse comes on shift and tells me to do things another way. I can't wait to get him home so I can do things the way I want to do them. I can't wait to be able to hold him when I want to, change him when I want to (more like when he needs it), bathe him when I want to (or when he needs it), and dress him in any type of clothes I wish. I can't wait to use all the cool things like the swing, bouncy seat, and play mat, that we have for him. I hope that day is coming soon where we can take him home. The doctors and nurses will only say his due date. They won't tell us anything else until a day or two before he is set to be discharged. I just really hope he takes all of his feedings soon. I want him home.

The Waiting Game

We have now entered what the doctors and nurses call "The Waiting Game". We are waiting on Jayden to learn how to eat. Unfortunately, it is not a practice makes perfect type of thing. It is a neurological maturity thing. They say that one day it will just click, a light bulb will turn on and he will be mature enough to eat his entire feeding by bottle. Once that happens and he is consistent for a few days, he can go home. He will be 35 weeks gestation on Tuesday. I hope it clicks soon. They say that boys take longer than girls with this. So we just sit and wait. Right now he is only taking about 10 ml by bottle. After that he gets so tired that he falls asleep. The good thing is that he isn't stopping breathing while he takes it and he seems pretty coordinated with the suck, swallow, and breathe process when he does take a bottle. 
He is up to 5 lbs now! His cheeks are filling out. His legs and arms are still so skinny. It won't be long before he can wear newborn stuff. 
Jayden was put back on oxygen a few days ago. With him working on feeding more and doing so much growing he needs the extra oxygen to compensate for the altitude. If we were at sea level, he would not need to be on it. Depending when he comes home, he may have to go home on it. I am nervous about how that will work. I know the home health people bring everything and set it all up. I know they give you the ability to travel with it and I am sure it becomes second nature once you get use to it, but until then I am anxious. 

I am getting very tired of the drive to and from the hospital. I forget that I only gave birth to him two weeks ago. I forget that I just had a major surgery and my body is not only still physically healing, but trying to heal emotionally as well. I can barely make it through the 10 pm news before crashing. It so hard to do anything more than the bare minimum when I am home because of the constant travel and around the clock pumping. I know that if he was born full term I would be just as physically exhausted, if not more, but I highly doubt that I would be as emotional exhausted. I just want him home!

Settling Into a Routine

The last few days Jayden and I have settled into a routine. I arrive at the hospital around 10:45 in the morning and do his massage that the occupational therapist taught me. Then at 11 I take his temperature (which he is not a fan of, I keep reminding him at least it isn't rectal). Then I change his diaper (which is almost always poopy due to breast milk) and change his clothes. Then I put him to breast. He is doing AMAZING latching on and eating. About ten minutes later the nurse starts his gavage feeding. After he is done breast feeding we cuddle for the 40 minutes that the gavage is running. After he is done eating I have to put him back in his crib so that I can pump. Then I go to lunch. The hospital has a Subway which is awesome and a beautiful outdoor area to sit (if I can get a table at that hour). I usually read or respond to texts or calls at that time and enjoy the fresh air. Yesterday I actually got sunburned. I forgot I haven't spent any real time outside in the past few months between the heat being unbearable and being restricted in my activities. After lunch I go and sit with JJ until his 2 pm feeding and I start the process all over again, except instead of breastfeeding we kangaroo while he is getting his gavage feeding. The nurses don't want to over tax him with back to back breast feedings. I have to leave around 4 pm to get home and feed the heard. Sometimes Jay and I go back for the 8 pm feeding. 
Monday was a busy day for my boy. He got his first bath and did GREAT! The nurses were impressed that I stayed calm as did he. He only cried for a second or two when I was washing his hair. Then at his 8 pm feeding, which we were present for, they started him on the bottle. He only stopped breathing once, and he corrected himself so quickly that only the nurse who was holding him saw it. He didn't even drop his stats. This is one step closer to him being allowed to come home. He has to take his entire feeding by bottle or breast before he is allowed home. This is the last hurdle (that we are aware of) for him to be discharged. 
Yesterday he took two of his feedings by bottle. He finished about 1/2 of the bottle and received the rest by gavage. Today he did such a great job breastfeeding that he ended up puking up some of his meal because he had gotten so much by breast and then his entire gavage feeding. The nurse said she will leave a note for the day nurse tomorrow to lower the gavage amount if I see he has gotten a decent amount from me.
Having a routine helps keep my mind focused. But at the end of the day I hate that someone else is taking care of my child. The nurses are amazing. Truly Heaven sent, but they aren't his mother. I am. The other night he was having reflux issues, but Jay and I had to leave because he had to work the next day and it was getting late. The nurse had to hold him. That is my job. I know it may be irrational, but I worry that he doesn't know that I am him mom. I have waited so long to have him and to rock my own baby to sleep. It seems so cruel sometimes that I got this far, I made it over all these hurdles to have him and I was in the home stretch. I could literally see the finish line, and then out of nowhere another hurdle appears. I know everyone says that he will be home before I know it. That it is best for him to be there right now so the nurses can make sure he is 100% ok before they send him home. I know that. It doesn't make it easier. Of course I want my son to be 100% ok before I take him home. Until he is I know that he is getting the best care he can get for his needs. It doesn't replace the fact that I am him mom and I should be with him.