Holding On

Jack is holding his own so far today. My friend Karen started a prayer group for Jack on Facebook.

Here is the link if you are interested in joining:
https://www.facebook.com/groups/313482332087366/

Bad Night

The hospital called me last night to tell me that Jack had a really bad heart rate drop and stopped breathing. The ventilated him and were able to get him started again. His oxygen will now be at 3 liters per minute. He was having a feed at the time and they think it happened because of his reflux. They put the TPTN line back in so he will not get feeds into his stomach and he is going to get them into his intestine again.

So he pretty much lost all the progress he had made and has moved pretty far backward. I am hoping he can get it all back again soon.  I just wish he could stabilize and stop losing ground every time he gains a bit. I also wish I could hug him. It is such a bummer that he is going through so much without his Momma there. I do call constantly and they call me. In fact they called last night after 11 pm. It is pretty scary to see them calling so late at night because I know there is no way it is good news.

Please continue to keep Jack in your thoughts and prayers. Thanks everyone for all the support.

Oxygen

Jack is doing much better with the feeds. He is now getting 45 cc over an hour into his stomach. He is tolerating the feeds well.

He is still having pretty severe heart rate drops and oxygen desaturations. He had another really bad one yesterday where they had to ventilate him and use the c-pap for awhile. He seems to have a few significant episodes each day. Today they had to raise his oxygen to 2.5 liters per minute. They have tried to reduce it numerous times but he never maintains the reduction for very long. He is doing much better with more oxygen.

Both Julianna and I are sick. There is no way I can go see Jack if I am sick because he is at high risk for any respiratory issues.

I am still hoping to get him up here but it is taking forever. One of Jack's nurses said he might be ready to go home before we straighten out a transfer. I sure hope he is ready soon, but I am doubtful that it will be really fast since he is having so many issues with his breathing and heart rate.

I sure hope I get to see him soon. I can't wait to give him hugs and snuggles.

He Doubled His Birth Weight!!!

Jack has officially doubled his birth weight! He now weighs 4 pounds, 12 ounces. He is now a big fat fattie!

He is now eating through the gastric tube (into his stomach) only because he pulled the other tube out. He has been doing ok with that. He is still on oxygen although they were able to reduce it a bit. He has still been having some heart rate and oxygen saturation drops but it has not been as bad as it was.

I asked them when they were going to try feeding him with a bottle. They said they usually like to wait until the baby is totally off oxygen because the bottle feeding can cause desaturations.

I am still trying to get him moved but I am meeting a lot of obstacles. I am happy that he is doing better. Thanks for all the prayers and good vibes!

Good Day!!

Jack is having a good day! They started feeding him through the oral gastric tube so the feed went into his stomach. He tolerated the first one well although he is on zantac because of his reflux. They raised his caffeine dose because of his heart rate drops. That has helped him enough that they were able to reduce his oxygen to 2 liters per minute. He is stabilizing so as long as the insurance issues work out soon he might be able to moved closer to home soon.

I am hoping this upward trend continues!!

Good and Bad - Day 52 in the NICU

The good thing is that I had success with Social Security. The woman from the Little Rock Social Security office, Freda, tirelessly worked on this. She called the hospital, social worker, doctors, vital records, etc. She got the info and faxed it all to the social security office here.

I went to Social Security here. After the obligatory two hour wait I got to the window. I told the whole story to the woman. She went to the FAX machine and was able to locate the FAX from Freda. Jack's Social Security card request has been processed. The said I should receive it in one to two weeks.

After I got back from Social Security Freda called me back to see how it went. She said she should be able to access the number on Tuesday. She said she would call me and tell me the number even though it will take a bit for the card to come.

I am pretty happy about this and it means I should be able to get Jack on my insurance and then maybe transferred to a hospital closer to home.

Now for the bad part. Jack is no longer considered stable enough to transport. He has had a number of oxygen desaturations and a really bad one today where they had to bag him (ventilate) for awhile. I am hoping he gets to be more stable while I wait for all the insurance issues to play out but that might not happen.

Jack had a chest x-ray today. When I called to ask how it was they just said "hazy." Hazy is bad. Because Jack was on mechanical ventilation for so long and continues to be on oxygen there is a good possibility he has BPD. They have not actually diagnosed him with it but it is looking like he probably does.

Here is some info about BPD:

Bronchopulmonary Dysplasia (BPD)


What is it?

Babies who still need oxygen at 4 weeks before their original due date are considered to have bronchopulmonary dysplasia — one of the most common chronic lung diseases in infants in the United States.

What causes it?

Bronchopulmonary dysplasia occurs in different infants for different reasons. It can happen in full-term as well as premature infants and doctors believe that it's due to an individual infant's response to a number of possible factors.

The combination of the premature baby's immature lungs and the treatments (including machines and oxygen) to help the little one breathe is thought to cause damage (or scarring) to the lungs. Infections and pneumonia can also lead to the condition. Milder levels of damage are called chronic lung disease of prematurity (CLD). As the babies mature, they grow more lung tissue, which can improve their breathing over time.

How is it diagnosed?

The diagnosis of bronchopulmonary dysplasia usually doesn't occur until 2 to 4 weeks into the infant's life. At that point, the doctors make a diagnosis based on whether there was lung damage or an injury at birth and whether the infant has needed extra oxygen for a prolonged period of time. Chest X-rays can also help determine the extent of the lung damage.

How is it treated?

Bronchopulmonary dysplasia is sometimes treated with steroids to decrease the amount of scarring. However, because steroids can cause side effects, doctors usually wait as long as possible to begin steroid treatment. Steroids are never used without a complete discussion with the family about potential benefits and risks.

Other, more commonly used medicines include diuretics (which make the baby urinate, or pee, and help eliminate excess fluid that can build up in the damaged lungs) and bronchodilators (which relax the muscles that surround the airways and allow them to open up).
Babies with the disease also sometimes need ventilators (breathing machines) at home to help them breathe. And although it's uncommon, in severe cases, the surgical insertion of a breathing tube in the neck (called a tracheostomy) may be required so the baby can go home on a ventilator. Occasionally, babies need home oxygen therapy for several months.

How long will my baby be in the NICU?

Bronchopulmonary dysplasia is a serious condition that calls for longer stays in the NICU, sometimes up to several months. The smallest infants are usually the ones who develop the disease, so their stays are longer to make sure they're stable before they're discharged.


Jack has already had steroids and diuretics. He has not done well when they try to reduce his oxygen. But he is breathing on his own. He just forgets sometimes. I am hoping he does better with this soon.

They won't feed him into the stomach because they think his reflux is giving him some of the breathing problems. He is gaining weight.

People ask me all the time if Jack is going to have long term problems. I do not know. No one knows if any child is going to have long term problems. If he does I will deal with it and get him every possible type of help I can. I can retire and stay home with him full time to work with him if he needs that.

When Julianna was born they told me there was a good possibility she would have problems. She did. However, they were all things I could deal with, umbilical hernia, clogged tear ducts, urinary problems, reflux, colic, food aversion, projectile vomiting due to immature pyloric valve, breathing issues, slow gross and fine motor development, slow speech, etc. It was a rough road at times but she seems completely fine now except for being very small for her age.

So, I do not know what is in store for Jack. I do know that we love him and can't wait to get him home.

Getting Nowhere with SS

So, my frustration is growing. I spoke to a woman from social security in Little Rock , Ark. She advised me that it appears that the hospital tried to apply Jack for a social security number but forgot to put an address on the application.

She told me that she would fax some necessary information to the social security office here in Mineola, NY and that I should go there today. I did. I waited two hours with a bunch of smelly people who are not too up on the American culture pertaining to hygiene. When I finally got up to the woman I explained the situation to her and she went into the back to see if there had been any faxes. She returned to tell me there had not been any.

I left there and returned to work where I proceeded to call Freda, the woman from the Little Rock, Ark social security office. She told me it appears the FAX never went through, but also that she thought she needed more information from the hospital social worker. I asked her if she could FAX the information to me directly. She said they would not accept that. They don't accept faxed copies but they would if it came from another social security office. She told me NOT to go back today, but to go back tomorrow.

Just after I got off the phone with social security one of Jack's doctors offices called. They said they are trying to get insurance payment and he does not have insurance. I explained the whole situation to her and asked if she could send some type of medical document or bill in Jack's name. She said she didn't think she could do that due to legal issues. I advised her not to expect payment from me then. Legally speaking I must not be responsible. The attorney did tell me that I am not responsible if it is the hospital policy that is causing him not to have insurance and they refuse to make and changes to assist me.

Next I spoke to a woman from the hospital social work department. She said they can't change any policies in any way but they may be able to send me a letter of live birth and possibly a progress report stating his gestational age and weight. She thinks she may be able to get it to me with his last name as my last name. If that actually happens it would be a huge score and it should work. It has to be mailed since social security will not accept any faxed copies, except from another social security office.

I am hoping to have something change soon so I can get him transferred here. He is pretty much the same but I get annoyed because I do not feel like they give me too much information when I call about him. I called today and they nurse was out for awhile so I have to call back later. Also, I have NEVER heard from the doctor. Not once. I have asked the nurses to have the doctor call me but it has never happened. I have also asked what time the doctors round so I can call at that time but they tell me it can be any time. When I was down there the doctor was also there and I asked to speak to him. It was the day I was leaving and I was in a rush to make the plane. The nurse went and asked the doctor and he said sorry, I won't go out of order. So since Jack was at the end of the hall I had to leave there before he could see Jack or I would have missed my plane. I really want him closer to home so I can see him all the time, be more involved in his care and be informed about his care. None of these things are happening where he is.

So that is the saga for today. I hope to have better news to report soon.

Jack Still Being Held Hostage in Arkansas

Because Jack was born via gestational surrogacy there was a lot of legal work involved. We had a contract and we had a post birth order. There is usually a pre-birth order but Jack decided to come before it was completed. The legal paperwork goes by Arkansas law. Arkansas law is very favorable to surrogacy, which is why the agency recommended that state.

Jack was born at Baptist Hospital in Little Rock. The attorney (Heather May, awesome) had all the paperwork done and the birth certificate was in my name right away.

I have his birth certificate but I did not yet receive his social security card.I need the social security card to get him on my medical insurance. I have called the hospital, Social Security, Arkansas vital records, medical records at the hospital, women's services at the hospital and every other office I can think of.  I finally had the attorney call and see what the problem is. It turns out the hospital did not apply him for it even though we did the paperwork for it. When I called they said they will not do that since it was a surrogacy. In order for me to do it myself I need the birth certificate (have it) and proof of identity. Proof of identity for a newborn is a medical record. However, they have everything in my GS's name. They refuse to change it to my last name despite all the legal paperwork.
I advised them that I would not be able to pay his bill if he is not on my insurance. His NICU bill should be around $1 million. The woman then said she would call me back.

The woman calls me back and said they are not worried about the bill because the applied him for SSI. He is automatically eligible for SSI because his birth weight was under 1200 grams. I asked her if she could please send or fax me a copy of that application and she said no. That is only something that can be seen by their social work department.

Obviously there must be a social security number if he is getting SSI. I do not know why I (his parent) would not be entitled to that information.

So currently my son is trapped down there in Little Rock and I can't transfer him  here.

I wish I could just go down there, walk into his room, open his isolette and walk out with him. Obviously that would not be in his best interest, but I am so frustrated with this situation.

My advice to any IPs (intended parents) using Arkansas would be to NOT use Baptist Medical. Also, where ever you are having your child find out about policies of this nature. My lawyer had never heard of anything like it but it is not normal for a surrogate to have a baby so early.

Make sure the hospital will put the baby in your name immediately. Our contract and birth order states that it will be that way but the hospital policy does not. They will not change his name on the records until he is discharged. You can probably have your lawyer call the hospital and find out the policy before the delivery so you are not stuck in a situation like this.

I really like the lawyer and she is trying her best to get this situation taken care of.

What It Is Like To Have An Early Baby

Jack is doing about the same. Not too much new. He is still eating via tube into the intestine. They haven't tried it going into his stomach again yet. He is still having periods of apnea and bradycardia. They are going to try to feed him into the stomach some time this week.

Tuesday January 8th was Julianna's 5th birthday. She came early as well and spent 18 days in the NICU. I was able to give blood on her birthday. That was a big deal to me. I needed single donor platelets after her birth but they weren't available. Jack has gotten a lot of blood transfusions and I did too after my surgery. So giving it back is a way of celebrating our lives for me.

 

 

I came across this essay about what it is like to have an early baby. It was on a blog called its a preemie thing.



NOTE: Other than grammatical errors, this post was originally written three years ago, the week Aeva came home from 92 days in the NICU. An update is included at the end.
My husband had posted all of my Facebook notes that were written from the NICU as everyone requested updates on Aeva’s progress. A popular question, with which I still have a hard time dealing with, was, “how are you doing?” I don’t think I’ve ever honestly answered that question to any one other than Anthony.

There is no way to describe what it feels like to have an early baby. No pregnant woman ever contemplates the “what if” of preterm labor and birth, or complications. No one tells you of them. Sitting in the exam room of my OBGYN’s office, of what I thought was a normal appointment, and hearing him as k “how far along is she,” after I failed my urine test was a less than stellar feeling. He came in put me on bed rest, effective immediately following further testing at the neighboring hospital. There was no questioning this, I knew it was bad. When the tests came back so terribly that he sent me to Vanderbilt University down in Nashville because our hospital was ill equipped to handle 30 week babies, it was worse. Getting steroid shots in hopes to aid lung maturity means business, and that there’s a baby coming soon.

I was determined not to have a baby that night.
I held out four days…2 steroid shots…3 ultrasounds…many blood tests…and 4 days in a bed…until the anastesiologist walked in and said “just in case, is now, now.” My husband had gone home to do somethings, and luckily was on his way back, because I was being prepped for surgery. I had a lovely dose of toxemia, meaning my kidney and liver were rejecting the pregnancy, producing enzymes which in turn made my heart work harder than needed. Now called pre-eclampsia, the condition effects 1 in 8 pregnancies. Pre-eclampsia is characterized by high maternal blood pressure, water retention, and protein in the urine. A complication of this is called HELLP syndrome (hemolysis, elevated liver enzymes, and low platelet count), makes this all so very worse. I got both, and with rapid onset.

It was a baby or me situation, and for it to be the both of us, baby needed to be delivered NOW. And NOW means NOW in the labor and delivery wing. I rolled over and I don’t think I’ve ever cried so hard before in my life.There was no way that this baby in my tummy could come now. It just wasn’t time.

There’s the feeling of fear. Fearful that she won’t be okay…or that something is wrong with not just me, but with her. Fearful that even a c-section birth would be too stressful on her. Fearful that though the neonatologist said that babies born at that gestational age (30 weeks) have a 97% survival rate…that she wouldn’t survive. They were worried about her because she was small…would be be too small to survive? Would she be underdeveloped? There’s the fear that your husband would hate you for not carrying his baby to term. Fearful that he’d think you did something wrong to make this happen. Fearful that he thinks it’s your fault. Fearful he’d just hate you.

Luckily, baby girl dumbfounded the doctors in her extreme healthy despite her very low birth weight. And luckily, Anthony didn’t find it to be anyone’s fault.

Anthony and I had a few choices of names picked…and it was this moment that I knew which one I wanted it to be. I wanted Aeva because it was strong name. AEVA RENDINA. So strong. Strong was what she was going to have to be right then when she was going to come out, and through the next few weeks through the rollercoaster of the NICU. Jaqueline came from my Aunt Jackie who was full of piss and vinegar. Also strong. Aunt Jackie was a strong, strong woman. This baby was going to need to be strong and have an attitude. Aeva Jaqueline Rendina. AJR. Her Daddy’s initials. A strong man. This baby was going to need all the strength she could get.

I had an amazing anastesiologist who calmed me down…at least enough that he could give me the epidural…which in itself is a weird feeling. Not having sensation from bra-line down, but feeling the tugging of a baby being taken (not delivered, but taken) from your body is….well…hurtful. You literally feel empty inside when it comes out. You’ve come to know and love this little person growing inside of you as a part of you…and when it’s taken from you…you’re literally empty. What seemed like forever later, the baby made a sound, which at that time sounded like a kitten rather than a baby…the best sound in the whole entire universe. This early baby made a sound.
Not wanting her to be alone, I sent her dad out of the operating room to be with her…I’m a big girl and can handle being alone…this baby was taken from its warm home and thrown into the terrifying world of a hospital of all places, without first being held and loved by her mommy or daddy…she needed her Daddy as close as possible…
I didn’t get to see the baby for 24 hours….I was on anti-seizure medication again and didnt get to see her until the next night.

The night Naomi met her daughter for the first time!

If there is anything in the world that just makes your heart sink…your stomach churn…your eyes water…and your mind go crazy..it’s seeing that baby that you’ve felt moving in your womb…out into the world so little…so thin..so helpless…so peaceful…with tubes and iv lines…
I didn’t see her when she had the breathing tube in (thankfully)..she only had it for 4 hours…
There’s that feeling when you first know that you can finally go see her that’s bittersweet…overjoyed that you can FINALLY see your little baby…and that feeling like you don’t want to see her because it’s your fault…There’s nothing to say to anyone when you have to look through the plexi-glass of an incubator to see your baby…or ask permission of a NURSE to touch YOUR baby…or the feeling when you first hold them…the feeling of relief that she’s okay and she’s made it this far…but the feeling that it’s your fault…the only thing to say to her at this point is, “Hi, I’m your mommy…I’m sorry.”

I’m sorry is all I could really say for a long time. I’m sorry. I’m sorry. I’m sorry. I’m sorry that you’re here so early. I’m sorry that I got sick. I’m sorry that if it came to “you or I” that they picked both of us…they should have picked you. I’m sorry I couldn’t give you the home you needed to grow in inside of me. I’m sorry you have to finish maturing in a plexiglass cage…I’m just sorry.
This is when we finalized her name, and that her birth certificate and incubator tag got a name. She looked like an Aeva. She looked strong. She didn’t look like what you would think a preemie would. She didn’t look sick. She looked strong. She was Aeva Jaqueline Rendina.

Part of it was adjusting to blood pressure medication. but when I’d see her for the first week or so, I’d get really hot, and faint, and would need to sit. The overwhelming feeling of guilt and pain (physically from the c-section, emotionally from this “journey”) just hurt. We couldn’t hold her and tell her everything was going to be okay. Honestly, we didn’t know yet if everything WAS going to be okay.

The only thing we could do was to pull up a chair and sit. Sit there and stare at her. Be there for moral support. Talk to each other, talk to to nurses…talk to her through her incubator (also called an isolette) so that she learned who we were from or voices.

When a preemie is first born, and for some time after, the only way to touch him/her is to put your hand on the soles of their feet, and to cup their head. Stroking a preemie like you would a “normal” (the PC term for this is to call them a term baby)baby is too much stimulation, and isn’t optimal for them. Aeva learned affection, love, and security through this.

The sleepless nights thinking of how she is doing…the eagerness to be next to her even though we couldn’t touch her…there are no words for it. For a while, she went through what we (NICU veterans) call a “spell.” A spell is a bradycardia (decrease in heartbeat) and apnea (forgetting to breathe) episode. Essentially, when she turns blue. At first they are the most traumatic thing post c-section. The first time you see your baby turn blue because they are so small and early that they haven’t learned to self regulate….is…well…heart wrenching. The good news is, is that the bigger they get, the less often they happen, and the more used to them you become. It gets to the point that spells don’t phase you, and how to stimulate her to breathe again is second nature. The beeps and alarms of the NICU become normal, and you can tell what each one means by it differing tone. The higher pitched and faster it is, the worse the reason.

The guilt of thinking that it was my fault she was born early never went away. It got better, but it didn’t go away. Consciously, I know it wasn’t my fault. But as a mother, there is nothing else to say or think than it was MY fault. It was MY responsibility to give her the right enviornment to grow in…MY responsibility to be healthy and keep her warm and comfortable inside so that she’d grow. But somewhere, the universe thought differently. Only 2-8% of women experiece toxemia (preeclampsia) in their pregnancies, and even fewer of that experience HELLP, a complication of the complication. I got both. I got it bad. Somewhere I pissed off the pregnancy goddess and she got her revenge.

There’s the anger feeling…being angry that some women don’t even WANT kids, and have ACCIDENTAL pregnancies, and carry their babies to term. How come I wanted nothing more than to have a baby and experience birth, and I had to get the short end of the stick. I took care of myself. Perfectly. I excersised. I ate well. I took my vitamins. I still got the short end of the stick. I only had gained 10lbs at 20weeks pregnant. At 30 weeks, 1 day, I had gained 37lbs. In the 48 hours I lost 20 of it. Water weight. I never looked pregnant. I looked like I was getting chubby. Never pregnant. Never really had a belly. I could still see my toes. I never really felt her move. She didn’t move often. (Turns out she was breech and I only felt her back) The first time I felt her have the hiccups was the day that I was admitted to the hospital. The doctor was happy to see her “practicing” breathing en utero…it meant she had a good survival chance.

There’s denial…the daily thought that “today’s not the day. I can make it another one. I’m NOT having a baby today.” But honestly, it’s just denying the fact that it literally is a 15 minute by 15 minute wait…when my blood pressure was taken it was just the matter of how high was it. Was it high, but low enough to let me relax and try to hold out…or was it high and was just high. The anxiety of needing to know what my blood pressure was probably never helped. There’s the denial post-”birth.” Not wanting pictures to be taken of her. Not wanting too see the ones that were taken. Not wanting to see that the fact that she was soooo little was immortalized for all of posterity to see. Why would anyone WANT to remember her so little…

There are those moments that the only thing to do is to curl up and cry. Just cry. Not even say anything. Just let it all out. I had to stay calm to try to keep my blood pressure down that there were so so so so many tears built up. They came out over the following weeks.
Then there’s that moment when all that stops. It’s the moment that being a mommy kicks in. It’s the moment that those selfish feelings are put aside…and the only feeling left, is the feeling that says to do whatever you have to do to help her. When you watch a baby in a pure survival mode it’s all you can do…it’s the feeling that if she’s doing what she has to do to survive…then the only thing I can do is put aside my thoughts and do what I need to do to help her to make the struggle just a little easier on her.

In those early days, it meant talking. Letting her hear our voices. It meant eating well so that the breastmilk was nutritious. It meant pumping as much milk as possible because breastmilk was her key to success. It meant taking each day as it came…just like she did…And the hardest one was…it meant not holding her. Holding her stimulated her. It made her burn precious calories that she needed to grow…to regulate her own temperature…to make blood, fat and everything else she needed. It meant out of 1440 minutes in a day…we held her 20. She learned to love us by us doing her care…taking her temperature…changing her diaper..taking care of her umbilical cord…

There is the rollercoaster ride of the NICU…sometimes everything goes well…and then all of a sudden, there’s a step backwards. Indeed, it was a rollercoaster.

But then there’s the triumphant feeling of leaving. Of putting her in the car seat and rushing the nurse through the discharge information…and then walking out that door. For so long we’d watched people take babies out of the hospital while we were bringing stuff in…today was the day that we weren’t taking anything IN. We walked OUT. Healthy. Together. Triumphant over the horrifying NICU. We beat it. We made it through it. Most importantly, AEVA made it. SHE fought each and every day to make it. We just were there for moral support.

I’ll never accept the fact that she was born early. I’ll never believe you when you tell me it wasn’t my fault. I’ll never be able to get frustrated with her for things that aren’t her fault, and that are just from prematurity. It’s hard to not get frustrated when she throws up all the time..or when she doesn’t do something “right.” The only thought that goes through my mind when frustration starts to…is that its not her fault. She’s doing everything the best that she knows how to. If she was a term baby, she’d know how to better. It’s not her fault that she has to work just a little harder to do some things. And it’s definately not her fault she was born early.

I don’t like pregnant women right now. I’m jealous. I HATE hearing pregnant women complain about how fat they are, or how scared of labor they are…how how it hurts when the baby pushes into their ribs. Shut up. Some of us never got any of that. Some of us never got to be “pregnant.” (The big ‘ol fat kind where you can’t see your toes or when you need help standing up from a chair.” Some of us WISH we couldnt lose tthe baby weight…it means that we were pregnant. So those of you who are, or know people who are pregnant, make sure you know that pregnancy is a sacred time. It’s beautiful.

There’s that moment when you get to come home and prepare for homecoming…to nest..finally…that’s like nothing else. It’s what having a baby SHOULD feel like. Exciting. Happy. Anxiety. Wanting everything to be perfect. There’re those moment when you’re so tired from not sleeping that all you want to do is sleep…but all you CAN do it stare at her…wondering how could such a little girl have gone through so much already. Anthony and I didn’t survive the NICU. We aren’t veterans. Aeva is. SHE did that. Aeva made it through the NICU.

There’s that feeling of running your finger over your c-section scar. The scar that reminds you daily of what happened. There’s no forgetting this. There’s no forgetting that Aeva was born early under an emergency circumstance. There’s a 5 inch scar reminding me every. single. day. Everyday. Every time I shower, I see it. I see the place that Aeva was taken from…the place they opened up to see her little tushy staring up at them…Being butt first was her little way of telling the doctors to “kiss my ass.” There’s the tingly sensation around the scar from nerves regrowing…its the feeling of being empty…of knowing she was taken from there…

Then there’s relief. Relief knowing that the little girl laying on my chest is healthy. She’s HEALTHY. She defied all odds and is healthy. She’s not delayed in any way; she’s met all milestones thusfar. She’s a strong little girl. There is no strength in the world that surpasses that of child who has survived the NICU. Watch out world, Aeva’s here.

UPDATE: Aeva turned 3 two weeks ago. She is full of personality, highly intelligent (and I’m not biased on that), and shows little signs of being premature. She’s very, very, small for her age. She’s 21lbs, and 34 inches tall. She has overcome hip dysplasia, feeding problems, texture and oral aversions, delayed speech, and mild developmental delay. At 3, she tests 100% on target, if not AHEAD for her age! She has hypothyroidism and growth issues, but undetermined if related to prematurity. She talks, has personality, and is very strong willed, vivacious, little girl. She never stops moving! She is in gymnastics, preschool, and LOVES to play! Aeva has an amazing imagination, and loves caring for babies. Medical care for her is preventative, and for the most part, she can say she kicked prematurity in the butt! She is THE cutest little girl ever, and I am STILL so VERY proud of her. She is my love, my life, my everything. Most importantly, she is my HERO.

Updates

Jack is doing ok but he continues to have periods of apnea, bradycardia and oxygen desaturations. They generally get him going again with minimal stimulation. Occassionally he needs his oxygen increased or a quick ventilation. He is over 3 pounds now.

I am having a lot of trouble trying to get him closer to home. The hospital in Arkansas agreed to release him. The hospital here agreed to take him. The air ambulance and neonatal transport team is set up. The problem is that I don't have his social security card yet. He is on my insurance as a newborn but not yet in his name. In order to get him on in his name I need his birth certificate (I finally  got that) and his social security card. I have not yet received his social security card. I applied for it through the hospital.

I called social security to see what is happening. I was on hold for over an hour. When I finally got a person he told me he couldn't do anything for me. I told him I just wanted to know if it was mailed or if they actually received the application. He couldn't say. If I go to social security I need his birth certificate and proof of identity. They consider a medical record proof of identity for a newborn. The problem with that is that the hospital has him under Tierney's last name and they will not change a name once it is listed in a name. The birth certificate has him as my last name.

So Jack is stuck in Arkansas do to a social security issue. I am hoping to get it fixed ASAP. Ugghhhhh.

Pictures

Jack with his eyes open.

 

 

 

 

Jack getting blood.  

 

Jack and Mommy holding hands. 

 

 

Kangarooing with Jack. 

 

 

 

Saying goodbye (for now) to Jack.

 

 

                                                 Jack awake. Taken by Tierney on her visit.

Setbacks

Jack is having some major setbacks.  He was doing great. He was breathing on a relatively low oxygen setting and gaining weight.

I got here in Thursday in the very late afternoon.  Jack was doing well and I got to kangaroo with him.  It was great!  His weight hit over 3 pounds and we thought that was great.  The next day I got to kangaroo him again but his heart rate, O2 saturation and respiratory rate all dropped a number of times while I was visiting him.

I got here this morning and he is in an open crib, has an iv in each arm and his O2 level was way up.  I asked what happened and they told me he had a lot of issues during the night. He  had continual oxygen saturation and heart rate drops. He was struggling to breathe. They had to raise his oxygen levels.  When that didn't work they put him on CPAP.  Then they checked his hematocrit and it was low, so hey decided he needed a blood transfusion. He is getting two transfusions of packed red blood cells. They can't give actual blood because it would be too much volume. They have to suspend his feeds durning the blood transfusions and for four hours after he receives the blood.  That is a big deal because he is on continuous feeds.  His feeds will be stopped for 12 hours. He is on iv fluids because his feeds are suspended. The iv fluids are causing him to swell.

There were some signs that there were some problems yesterday. I held him for about an hour and when we put him back in his isolate we took his temperature. It was pretty low.  Th nurse attributed that to us forgetting to put his hat on but I doubt that could have caused his temperature to go so low so fast. However, his anemia can do that. They said the anemia is from blood draws as well as anemia of prematurity. His bone marrow is just not ready to make all the red blood cells he needs. He also looked a bit swollen to me yesterday.  I have learned that big weight gains are not always a good thing for Jack. They are also not accurate. He retains fluid and the big weight gains are usually related to that.

Jack had his eye exam  the day before I got here.  He does have retinopathy of prematurity (ROP) .  It is stage 1, zone 2. They are going to watch it. It can get better or worse. The are times when it can self correct or he will need laser surgery. The laser surgery usually helps, but not always. I had a feeling he would have this since he has just about every risk factor.  He still has risk factors for it to get worse, but I am praying that it doesn't.

I also found out that he has a long way to go on feeds. I was thrilled that he was taking his feeds so well but it turns out they were unable to feed him into his stomach so they bypassed his stomach and the feeds are going into his intestines. He is absorbing it and gaining weight, but he needs to be able to take feeds into his stomach before they can even think about releasing him. They can do much larger feeds into the stomach because it has a greater ability to expand. The intestine really doesn't expand much, that is why he gets continuous feeds, because it is a smaller amount over a greater period of time.

I was looking into getting Jack moved to a hospital that is closer to home. He would go in a fixed wing air ambulance with a neonatal transport team, but he has to be stable. He was very stable and things were looking pretty good, but unfortunately that is all on hold now. It was never a definite anyway, but I was optimistic that it might happen.

So, I am enjoying m visit with Jack. He is so super cute. I really loved holding him. I won't be able to hold him again today because he can't be moved during, or just after his blood transfusion.

I will be heading home tomorrow. I have to drive to Memphis from Little  Rock, then I fly to Atlanta and from Atlanta I fly to NY. It is not an easy trip, which is a bummer since it appears I will be doing this trip more times before he can move closer to home.

Thanks everyone for the prayers an good thoughts. Thanks so much to everyone who helped me with Julianna. XXXXXXXOOOOOOOO!

Heart Rate Drops

Jack is 5 weeks old today. I have not held him yet and that makes me pretty sad. I see pictures all the time of people "kangarooing" their preemies and often those babies are smaller than Jack. I really want to hold him this time and let him know that his Mommy loves him.

Jack is still off the ventilator but he continues to have periods of apnea (not breathing) and heart rate drops. When he has these "spells" as they like to call them in the NICU, he responds to stimulation and starts to breathe and that cause his heart rate to rise again. It is a little scary to me. He seems to have a number of them each shift.

He had another head ultrasound on 12/31 to check if he has any bleeding into his brain. It came back as "within normal limits" which means he has no bleeding into his brain. Obviously I am really happy about that.

He is going to have an eye exam this week to see if he has retinopothy of prematurity (ROP). In the worst cases ROP can cause blindness. They now do laser surgery for this and it has varying degrees of success. I will have the laser surgery done as soon as possible if he does have this. They can do it right in the NICU. Jack is at extremely high risk for this since he was so early, so small, on a ventilator for so long, anemic, on oxygen (still) and having periods of apnea. Here is a link if you want to know more about ROP.
http://www.retinopathy-of-prematurity.com/rop/

I am going to see Jack tomorrow. I have to fly into Memphis and drive over to Little Rock. It is about 100 miles and is a straight interstate ride. It is not too bad and I did it once before when I went down for a sonogram.

I want to find out more about the possibility about getting him transferred closer to home. I know they told me it was virtually impossible when he was first born I really want to find out if there is ANY way to do it. It is extremely difficult for me to go back and forth to see him. If I could get him closer to home I could go every day and feel like I am a lot more involved in his care.