3 Weeks at Home

Weeks with us: 11
Corrected age: 5 days (due date February 23)

As of yesterday, Rhys and I have been home for three weeks- it has gone by very quickly!

Since we've been home, Rhys has gained some serious weight. In fact this morning I had the bittersweet task of packing away his newborn clothes, since he has outgrown them. Here's a recent picture of his chub:

Thomas and I are adapting to being parents of a newborn- Which means we are zombies. Somehow, I am holding up a little better than Thomas, which is strange since I'm the one waking up to nurse. It's amazing how you don't begrudge that precious baby waking you at 3am, but if anyone else did...

This picture is from our first week home- Thomas and Rhys were both equally exhausted. 

I can't describe how wonderful it is to have him at home. I know this is something most parents take for granted, but I hope we never take our time with him for granted- it is so very precious. Rhys seems to enjoy spending time with us, too. He is quite the snuggle bunny. His favorite sleeping spots are on our chests or snuggled into my side on the bed. 

Here are Rhys and I enjoying some snuggles his 2nd day at home:

Thomas and I wanted to purchase a side-by-side co-sleeper, but as of right now we are borrowing a bassinet from a friend. Since Rhys has reflux, I kind of had to jerry-rig everything to get him in the right position. I have towels rolled under the mattress to keep him inclined, blankets rolled on either side so I can place him on his side after nursing, and a blanket rolled at the bottom so he doesn't slide down too far. Whew. 

This pic was taken after nursing (he always passes out)- I had to run into his nursery and grab some clothes, so I just laid him down quickly. Then, I had to snap a picture- his arms were just too chubby and had to be captured on film!  

As you can see from our pictures, Rhys is still on oxygen. Thomas and I believe his lungs are maturing, but we won't have a definite go-ahead to take him off oxygen until our appointment at the Pediatric Pulmonologist. Getting in at the Pulmonologist is like getting in to see the Wizard of Oz. We were supposed to have an appointment by March 5, but the soonest we could get in (after trying NUMEROUS practices) was April 8. Guess we'll be dragging around that tank a while longer!

Besides that, things are going very well. Rhys is eating like every meal is both his first and last- during the day he wants to eat every 1 1/2 or 2 hours, but usually he'll take one 3 hour stretch at night. We've had a few issues with his reflux and gassy tummy, but I believe they were from the fortifier we were using in my milk. We have since quit using the fortifier, and he seems much happier. I'm trusting that my body knows what it's doing, and he's getting just what he needs without anything extra. I think he looks pretty satisfied. 

36 weeks corrected

Days with us: 46
Corrected age: 36 weeks


Our little munchkin is 36 weeks corrected today- with all of the 'baby' things he is doing (drinking from a bottle, nursing, staring at our faces, etc) it's hard to believe he should still be a month away from birth. 

After Rhys's right lung shut down 2 weeks ago they placed him on a VERY high flow cannula- 4 liters per hour. The plan is to slowly ween him down to a low enough flow that he can go home. He is now on 2 liters and seems to be tolerating it well. Rhys's respiratory issues are really the only thing holding him back- he is taking a bottle and nursing like a champ, but is only allowed to do this 3x a day right now. (I think he could handle more, but they don't want him to get too worn out- his energy needs to be spent growing!) Besides his air flow and taking all his feeds through a bottle/nursing, Rhys has met all the requirements to go home. I am praying his lungs are growing at an amazing rate, and he will be able to go home soon. I think he's asking for that, too. 

Recently, I made friends with another NICU mom (whom I met in the pump room, of course). I have been trying to encourage her as much as possible- her baby was born at 26 weeks weighing only 1 pound 1 ounce. (She about a week old now, and is right at a pound.) The mother's name is Angela, and her little one is Hannah- please keep them in your thoughts and prayers as well. Angela was told her baby might not survive, and she is so worried about her. 

Some days, it's so hard to be there- it can be so overwhelming. I am trying to keep it together for, what will hopefully be, only a few more weeks. 

Of course, the wonderful thing about all of this is our precious Rhys. 

If you are interested in seeing more pics of Peanut, here is a link to a facebook picture album:

http://www.facebook.com/album.php?aid=2242658&id=46203681&l=19014bcc09

Hard times are upon us...

I feel like we've really been through the ringer the past couple of days.

I spent the majority of yesterday (Wednesday) with Rhys in the NICU. He seemed to be a good deal more tachypnic than he had been. Because of this I chose just to sit by him and read and sing to him (I didn't want to stress his body too much by moving him around a lot.) When it was almost his 5:30 'hands on time' (the time when he gets his vitals checked, a diaper change, feed, etc) I told his nurse I was going to go ahead and change him- he seemed a little fitful, but I thought he was probably just hungry. I turned back around and noticed that his oxygen saturation suddenly dropped to a dangerous level- when I looked back at Rhys I saw that he was very pale, almost gray, and was arching his back trying to breathe. I yelled for his nurse and immediately began unwrapping his swaddle blanket and unsnapping his clothes so I could do chest compressions if I needed to.
The next half hour was one of the scariest of my life- I sat there and watched as nurses, the doctor, and respiratory therapist (RT) all tried to get him to breathe and breathe comfortably again. It was a very helpless feeling, watching your child struggle to do something most of us consider to be so natural and easy. Once Rhys was somewhat stabilized, it was decided that he would be moved back into the 'ICU' of the NICU, where there is a RT in every room. Somehow, I managed to hold it together during all of this, including what felt like a very long walk back to Pod 2.
As this all happened late in the shift, I had to leave the NICU shortly after, during shift change. (Parents aren't allowed to be in the NICU during shift change- the nurses are giving report at this time, and there could be a breech in patient confidentiality.) I was late on my pumping schedule, so instead of leaving the floor, I went into the Mother's Pump Room.
Once I sat down, I broke down. I began sobbing, and couldn't stop. There was another mom in the pump room who was so kind to me- asking me if I needed anything, bringing me a box of tissues, and even laying her hand on my shoulder around the privacy screen while I cried. I have no idea what she looked like or what her name was, but I can't explain how much those gestures meant to me.

This morning, Rhys's doctor called me to discuss the results of his blood-work. Although his blood-work came back infection free, it showed that Rhys had an extremely low red blood cell count. She had ordered a blood transfusion, but called me to get consent since Thomas and I had requested that donor blood be given from family members, not the blood bank. Unfortunately, as Rhys had been stable, we never banked any blood and she didn't feel we had the luxury of waiting for the blood to be processed- which can take 5 days. So, this afternoon Rhys had a blood transfusion- I am trying to be thankful that some stranger out there has helped my son, and not be disappointed that he had to have a stranger's blood.

The other issue the doctor wanted to speak with me about is their diagnosis of Pulmonary Hypoplasia. PH is a very serious disease in which the lungs are underdeveloped and/or immature. It is actually the number one cause of stillbirths and infant deaths. Luckily, Rhys is in a place where he is being monitored and cared for 24/7. We knew there was a risk that Rhys would have this- during my pregnancy I had 2 of the 4 risk factors: early rupture and extremely low fluid levels. The doctor believes his is more a case of immaturity, and he should outgrow it in time. I am begging and pleading in prayer that this is the case. I would take this from him in a heartbeat, even if it meant I could never sing again. This diagnosis means that Rhys will probably be in the hospital longer than we originally anticipated- probably another month or so.

I am really frustrated right now- I'm having such a hard time understanding why God is allowing this to happen. It doesn't seem fair for such a tiny little baby to have to struggle so much.

I know God spared Rhys for a reason, but I'm ready for Him to heal him.

12 weeks since rupture

Days with us: 26
Corrected age: 33 weeks, 1 day

Sorry it's been so long since I've updated. The past few weeks have been a little hectic!

Here are a couple of pics from the past few weeks:

Snuggling with Mommy. 

So tiny in Daddy's arms. 

Enjoying a little time with Daddy before he had to head home.

I am still struggling to understand Rhys's early arrival. After being told for weeks that 34 weeks was the goal, it's hard to wrap my brain around the fact that God said 29 weeks was best. The other day I had a 'bucket of cold water' experience: I met another mom who wasn't pPROM, but had had low amniotic fluid. She was induced at 34 weeks, just as I would have been. Her son's left lung ruptured with his first breath. The following day, his right lung ruptured.
As we sat there talking, I realized how my little guy could possibly have been spared the same fate. That being said, Rhys does have lung and breathing issues- he is still suffering from Pulmonary Hypertension and they think he will need to go home on oxygen- but, the doctor seems confident he will outgrow these issues.

We have certainly had some ups and downs lately: Rhys 'honeymooned' for a few days and went to breathing room air without any assistance before having to go back on a cannula. He has been back and forth between a high-flow and a low-flow cannula since. He even spent a few days under an oxyhood when he had a sore on his nose and above his lip.

This was especially hard for me since he wasn't able to be held. Just about a day after he got the hood, Rhys came down with an infection. He is still under contact isolation, which means we have to wear a gown and gloves when we go into his room. Because of his isolation, today was the first time since Monday I have been able to hold him. You can see my lovely yellow gown in the picture below.

Doesn't he look like he's dancing?

Recently, Thomas mentioned that he had seen a poem or something about how God chooses preemie moms. I decided to Google it today to see for myself what it said.
The following is from the end of the story/poem (by Erma Bombeck):

"...here is a woman whom I will bless with a child less than perfect. She doesn't know it yet, but she is to be envied. She will never take for granted a spoken word. She will never consider a step ordinary. When her child says 'mama' for the first time, she will be witness to a miracle and know it. I will permit her to see clearly the things I see – ignorance, cruelty, prejudice – and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as she is here by my side."

30 Weeks Corrected

Days with us: 4

Corrected age: 30 weeks

Today is when 'belly time' would equal 30 weeks- in the NICU this is the measurement they use to determine their 'corrected age.'

This has been one of the best days of my entire life: I was able to hold Rhys for the first time. It was amazing.

Rhys has been doing wonderfully. Today was an especially big day for him- they moved up his mL of milk, he was taken off antibiotics as no sign of infection was present, they took out his intubation tube (he has a nasal cannula), and he got to be held by Mommy! His night nurse, Paula, told me I "cooked him good." It is a rather strange compliment, but I'll take it! Especially after so many week of worry about how he was "cooking."

Here are some pics of our time together today:

Thank you so much for your prayers- please keep them up! God's hands are obviously on this child. 

Day 2 in NICU

Here's a video from Rhys's birth, and a video and pictures from today.

Rhys is now breathing without any oxygen support, but is still on nitric oxide. Please be praying for those lungs!

Our New Arrival

Well, last night, God said it was time.

I began having extremely strong contractions at about 9:30, almost out of nowhere, and went from 1 to 4 centimeters in about an hour.

I was prepped very quickly for surgery- Rhys was not enjoying my contractions, so they wanted to get him out as soon as possible. This meant I had to have a spinal block- kind of scary. The spinal made my blood pressure drop a lot, causing me to begin vomiting, and I was having such bad chills they had to strap me down because I couldn't be still. It was all very dramatic.

In the OR we had about 15 people. Crazy! Not only did I have a team of doctors, nurses, and anesthesiologists,  but Rhys had an entire team from the NICU waiting for him.

The first words we heard from the doctor were "What a beautiful baby!" Then, I heard the most beautiful sound I think I've ever heard- my baby's cry. I was so happy his lungs were developed enough for him to cry, I began to cry myself. The docs called out his height and weight for me, since I couldn't see: 3 pounds, 3 ounces and 16 inches.  The entire process was very quick and surreal.

Before they took Rhys to the NICU, they brought him by quickly for me to see him. I was lovestruck. He is the most beautiful baby I have ever seen.

So far, Rhys is doing pretty well in the NICU. He hit a bit of a rough patch last night, so he had to be intubated, and was given nitric oxide. By this afternoon they had reduced his oxygen supplement by about 70%. They have had to work pretty hard to help him keep up his breathing. Please be praying that his lungs will begin to work just as they should.

Here are just a few pics taken with Thomas's cellphone. Poor baby was trying to sleep, and we kept bothering him. I'll try to post some more pics, or maybe even a video tomorrow.