Hanging Out and Cuddle Time

Ethan and Ryan's temperaments have turned out to be quite different. Ethan was never much of a cuddler, slept really well, and was a terrible eater. Ryan loves to be held, sleeps erratically, and has been eating a lot and gaining weight quickly. It'll be fun to learn their other differences and similarities as they grow up together!

Hanging out in his boppy

Ryan's favorite place to cuddle

New Doggies for Ethan and Ryan

A friend of our family, Alice R., made two very special stuffed dogs for Ethan and Ryan- Thank you Alice! The fabric patterns that she chose to make the patchwork dogs with were even customized for each of the boys. Ethan's has train and veggie fabrics amongst others (he is obsessed with Thomas and Train and is a huge veggie lover, which is great but funny to me since neither Dan nor I are big vegetable eaters). He actually asks for broccoli, corn, peas, and carrots. The doggies were a huge hit with both kids. Ethan carries his around all over (it sits at his craft table with him and "colors", watches TV with him, etc), and Ryan loves staring at the colors and patterns of his doggie. At this point it is one of the few items that we've found truly engages his attention.

Here is a photo of Ethan sitting with his doggie on the couch and a video of him talking about how much he loves his doggie.

One of Ryan's First Baths

Sadly we have no photos of Ryan's first "real" bath ("real" meaning other than the brief one he received in the Labor and Delivery room before he was taken to the NICU). It was the 8th or 9th day of Ryan's NICU stay, I had made a quick trip home to shower, and so much was going on that Dan didn't think to snap some photos when the nurse gave Ryan his first bath. It takes both of us to give Ryan his baths at home, so I only have post-bath pictures. Ryan wasn't a huge fan of being immersed in the water in his bath tub, but he did really enjoy getting his hair washed and head massaged (we did this in the sink after the tub bath). Here he is all clean and cuddling with Daddy:

And here he is sacked out after his bath (being bathed is hard work, you know)

Yay! Weigh In and First Dose of Synagis

I took Ryan to the pediatrician today to receive his first dose of Synagis. I read about it online as I was unsure as to how it differed from a normal vaccine, and I wanted to understand why you are required to get multiple doses on a strict timeline. I learned that Synagis is not actually a vaccine but contains antibodies to boost a high-risk baby's immune system to prevent the development of a severe case of RSV. The dose that is administered is based upon the baby's weight at each visit, and Ryan weighed in at 7 lbs 9 oz, so he has gained one pound and one ounce since he was discharged from the NICU on the 11th. I was very relieved both that he had gained weight well and also that we were able to get the first dose of antibodies in his system. He has to return to the office for another dose of Synagis within 28-30 days of his first dose in order to ensure that the level of antibodies in his system remains high enough to be effective. We are very thankful for our health insurance, as when the claim came through we found out that each dose costs $1700- yikes!

Visit from Grandpa and Grandma G.

Today Grandpa and Grandma G. were able to stop by our house and visit for a short time. Mom had held Ryan once in the NICU, but the times that Dad had visited he was not able to hold Ryan, so this was his first time holding his new grandson.

Proud GrandmaProud Grandpa (Ryan almost looks like a doll to me in this photo!)

RSV Vaccine

I was not aware than a vaccine for RSV existed until a nurse in the NICU mentioned it to me. It is extremely expensive per dose, so it is not routinely administered to newborns, but is available for those who are at high-risk of contracting and experiencing severe symptoms of RSV. I asked the neonatologist about it, and she said that the primary criterion for administration of the vaccine at the hospital was birth before 35 weeks of gestation, so even though Ryan has the risk factors of having had major respiratory complications and also has a pre-school age sibling at home, he would not be given the vaccine at the hospital. Our pediatrician brought up the vaccine during our first appointment with him and said that he could submit a request for approval of the vaccine to our insurance company based on Ryan's circumstances. He said that in the past some requests had not been approved, but a few had been approved, so it was worth a try. We got a call from a nurse at our pediatrician's office today notifying us that our insurance company has approved Ryan to receive the vaccine and (at $1000 per dose) it will be completely covered by insurance. What a huge praise! The vaccine will dramatically reduce Ryan's risk of contracting RSV and will be given in 2 doses (each dose is effective for 28-30 days). These 2 doses should last Ryan through almost the entire RSV season which winds down around the end of April. If anyone local needs a recommendation for a pediatrician please let me know. I cannot say enough great things about our's and his office staff- they have been wonderful with both of our kids. Thanks so much for recommending him to me Staci!

Ryan's Second Pediatrician Appointment

Ryan's second appointment with our pediatrician was this afternoon. He did a full physical exam, and Ryan was also weighed again. Ryan had gained some weight- yay! and overall looked really great, so our pediatrician thinks that he is doing very well. We are so excited that he got such a positive report. Our pediatrician was comfortable enough with how he's doing that he didn't think that we needed to come in again until his 2 month visit. I will probably bring Ryan into the office a few more times for weight checks prior to his 2 month visit, but we are so happy that he is now a healthy little guy!

Bouquet and First Days at Home

Flowers and balloons are not permitted in the NICU, so Mom and Dad brought us a beautiful floral bouquet after we were able to go home. The base that the flowers are in was used when my brother and I were born!

Our very sleep-deprived, but happy, family :)
Our sweet little guy!

First Pediatrician Appointment

I took Ryan to see our pediatrician today for the first time. The primary neonatologist at the hospital where Ryan was delivered had been very good about keeping our pediatrician updated on Ryan's condition which was great. They had spoken 3 or 4 times during Ryan's NICU stay, so our pediatrician was already informed of all of the respiratory complications that we had encountered. Our pediatrician was pleased with how Ryan's lungs sounded, and we weighed him to get a baseline on their office's scale (6lbs 11oz). I am going to bring him back for his official "2 week" appointment next Tuesday, and we'll see then whether or not Ryan has been gaining weight.

Going-Home Photos and Ethan and Ryan Meeting Each Other for the First Time

Dan and I got to remove the leads for Ryan's monitor from his chest as we prepared to be discharged from the NICU.

Almost ready to go home!
Ethan and Ryan meeting for the first time. My Mom and Dad got Ethan an adorable "I am a Big Brother" t-shirt that he was so excited to wear. He didn't want to take it off when it was time to go to bed. When he first saw Ryan, Ethan said "He's a tiny baby. He's SO cute!" and wanted us to take him out of the carseat so that they could play together.
Proud big brother

Retrospect Photos from the NICU

We are finally beginning to settle back in at home (the last few weeks have been a bit surreal), and I got around to uploading all of our photos from the hospital/NICU/first days at home. We were so consumed with Ethan's condition when he was in the NICU that we took very few photos during his first couple weeks of life (which I later regretted). I made a conscious effort to try to capture more photos of Ryan during our NICU stay this time.

Ryan receiving oxygen in his "hood", he also has a scalp IV and nasal-gastric tube

Ryan's isolette in his NICU room (all of the NICU rooms are private at the hospital where he was delivered which was incredibly nice)

Getting to hold Ryan for the first time since right after he was born
Dan holding Ryan after his scalp IV was removed
Phototherapy for Ryan's high bilirubin level (I thought it was cute how he was grasping his puppy Wubbanub pacifier with both hands)
Swaddled- Our little Ryan "burrito" :)
He looked so tiny in the carseat during his carseat test!

Discharged from the NICU

So Ryan couldn't let himself be outdone by his brother; He ended up staying in the NICU for 12 days just like Ethan. This whole experience has been deja vu to the nth degree.

I think that the neonatologist and nurse practitioners still harbor some concerns about Ryan's lack of weight gain, but these concerns did not constitute enough of a reason to keep him in the NICU. We were discharged from the NICU this afternoon and arrived home at about 5pm. I scheduled Ryan's first appointment with our pediatrician for Friday afternoon at 1:30pm. Hopefully the scale in their office will give us an accurate reading on Ryan's weight. The lactation consultant who was so helpful in the NICU was originally going to do a set of pre- and post- feeding weight checks, but after observing a second feeding and knowing that I have a huge milk supply, she didn't think that it was warranted. I still kind of wish she had gone ahead and completed the weight checks so that we could feel more comfortable that Ryan is getting enough to eat with nursing alone (no supplementation).

A major concern of the neonatologists and the nurses who cared for Ryan is the severity of RSV this season. We were advised by many NICU staff to nearly completely isolate Ryan from others until the end of April. Apparently RSV is running rampant this year and has resulted in countless hospital admissions of infants. Since Ryan has already been respiratory compromised, he would be even more susceptible to developing a serious case of RSV if he were exposed. We were told "NO" to: church, crowds, grocery stores, etc. We are supposed to "screen" everyone who enters our home to make sure that they are completely healthy. If people want to see him, we are supposed to not allow them to touch or hold him, but only to look at him from a distance. When we go to pediatrician appointments and weight checks, we will be entering the medical office building through a rear door so as to avoid the waiting room and any sick children and germs that we might risk exposure to otherwise. Ethan currently has a cold, so we have been extremely cautious about his interactions with Ryan. We are only allowing minimal direct contact with Ryan until Ethan is over his cold. Unfortunately, we are also supposed to restrict the places and number of kids that Ethan has contact with too. We were advised to keep him out of the church nursery and other circumstances where he'd be with a decent-sized group of kids until the end of April too. Two and a half months is a long time to keep both kids (and ourselves) isolated! I'm going to talk with our pediatrician on Friday to see how stringently we should follow these recommendations, as I'd (at a minimum) like to attend our mom's group at church, and Ethan is such a social little guy, I'd hate to keep him isolated from his friends for so long.

Thanks so much again for all of your concern and prayers- God has definitely answered prayers in providing wisdom to the doctors and nurses regarding Ryan's care and in allowing him to become well enough to come home!!

Unfortunately, upon arriving home, we discovered that our water heater was no longer working. So there was no hot water for us tonight. We didn't want to pay above and beyond the already exorbitant pricing for a plumbing repair by calling after hours (the emergency line), so we'll wait to take care of it until tomorrow.

It's Official- We're Going Home Today!

Verdict on Ryan's Weight and Carseat Test

Ryan was weighed Tuesday evening at about 7:30pm, and he had gained 10 grams from last night's weight (which is about 1/3rd of an ounce). It was encouraging that he didn't lose any weight, but Ryan had received pretty significant supplementation at 4 or 5 feedings prior to being permitted to breastfeed on demand, so this gain was with the assistance of additional breastmilk through his nasal-gastric tube. He has been a pretty sleepy boy since his circumcision, which the lactation consultant said was entirely normal since his cortisol level is expected to shoot up after the procedure. Just too bad that the timing of the procedure was during this trial period of on-demand nursing. I can nurse him whenever he is wakeful and showing hunger cues, but he cannot go longer than 4 hours between attempts to feed him. So far he has already gone 4 hours between feedings twice (though when we woke him up, he did nurse well). The lactation consultant also provided us with 2 Haberman feeder bottles that are made by Medela and are specially designed to allow us to control the flow of milk that Ryan would receive (and you can change the flow speed just by rotating the bottle). She said that 98% of babies who use this type of bottle are readily able to return to breastfeeding as opposed to using another type of standard bottle. If we need to supplement his nursing at home, we plan to try using this type of bottle.

Ryan is currently almost finished with his carseat test. In order to pass the test, he has to keep his vital stats up in normal range with the buckles fastened in his carseat for an hour. We started the test at 1am, so he'll be done in about 15 minutes. This is the last major item that has to be completed before he were to be discharged. So, if given the neonatologist's approval for discharge, we'll be ready to go.

Sad News

When it rains it pours, and we are so ready for it to stop pouring. Dan spoke with his dad tonight and we learned that Dan's grandfather passed away this afternoon (our last grandparent). I am very glad that we had been able to travel to visit him and introduce him to Ethan, but I wish that we would have had the opportunity to introduce him to his newest great-grandson too. He had teased me about making sure that we had at least one son to carry on his last name, and now there are two little guys who will very proudly carry on great grandpa A's last name.

First "Real" Talk of Possibly Going Home!

The neonatologist just made her morning rounds, and it was decided that Ryan's nasal-gastric tube will be removed, and they are going to allow him to nurse on demand today to see how he does with his weight. So, we won't have to feed Ryan in structured 3-hour segments anymore. The neonatologist said that if he loses a small amount of weight (like 5 grams) that won't bother her at all and we could very possibly bring him home tomorrow, but if he loses along the lines of 70 grams, then that would be a setback. The nurse practitioner wrote orders for him to get his carseat study done today, and he will also be circumcised. Our little guy is going to have a busy day for a 10-day-old! Please pray that Ryan does well with nursing and at least maintains his current weight and at best gains some. I didn't ask what the next step would be if he were to lose much weight today; I really hope that won't be the case... I'm going to be on pins and needles when he is weighed tonight! Regarding the bradycardia episode, as it turns out tomorrow will be the fifth day since that episode occurred, so we ended up not being eligible for discharge before the 5 day monitoring period was over anyhow.

Monday- Weight Issues

Now that Ryan has nearly fully recovered from his respiratory issues, what is holding us back from being discharged from the NICU is helping him to figure out eating and getting him on an uptrending pattern of weight gain. His nurse last night weighed him, and I asked her what the change in weight had been from the previous night. I was glad when she said that he had gained 2 ounces, even though I figured that a lot of that was due to the additional supplement of breastmilk that Ryan is receiving via his N-G tube with every feeding. I was surprised this morning though when the nurse practitioner came to examine him and said that she was very concerned about and needed to stop his continued weight loss and that he had lost 2 1/2 ounces since the previous day. I told her that I acknowledge that I am a bit sleep-deprived, but I distinctly remember his nurse telling me that he had gained 2 ounces. She said that was not what had been documented in his chart. So, I was confused and worried about if he really had lost that much in a day even with supplementation. During rounds (about an hour later), the discussion was primarily about substantially increasing the supplementation amounts for Ryan and possibly adding fortifiers too. That was really discouraging to me, because adding even more supplement meant that we were heading in the wrong direction as far as getting to the point where Ryan could just nurse normally. I brought up the weight discrepancy again during rounds, and I was glad that our day nurse was present as well because she vouched for what I had said about his weight. When his night nurse had transitioned Ryan's care to our day nurse, she had told our day nurse that Ryan had gained 2 ounces. Since there were two of us now claiming that the documented weight was inaccurate, they decided to weigh him again. Sure enough, he had gained 2 ounces! I'm glad that I said something again before his team of caregivers decided to take a more aggressive approach to supplementing him which (in my opinion) would have been detrimental to him ultimately learning to eat well on his own.

A lactation consultant had come to Ryan's room when I was first attempting to nurse him, and she had not been helpful at all. She said that my positioning of Ryan and his latch were correct and proceeded to get angry with Ryan for not sucking. She kept saying things like, "You have this all right, but he just won't suck" and "What's wrong with him? Come on, suck!" I couldn't believe that she was actually getting upset with a tiny newborn who had just been through several traumatic respiratory issues and was trying to nurse for the first time! I asked Ryan's nurse the next day to see if a different lactation consultant were available to come help, but unfortunately the same crazy lady who shouts at NICU newborns was on call. Thankfully today a lactation consultant who has much more experience with NICU babies was working, and she came to observe a feeding just after rounds were done. She was very encouraging and confirmed that his position and latch were correct, and he proceeded to eat well for about 10 minutes. The lactation consultant also provided me with some tips on keeping him awake as well as some general breastfeeding information. She was so pleased with this feeding that she talked with the neonatologist and convinced her not to supplement Ryan too aggressively. She's going to bring a very sensitive scale to a feeding tomorrow and do a pre- and post- feeding weight comparison for Ryan to get a better idea of how much milk he's taking in. Hopefully that will go well!

Last Friday the neonatologist said that Ryan was healthy enough for his circumcision to be scheduled, and a nurse had called our OB's office that day to let them know, but no one returned the call. I asked about it today since we're back into weekdays now, and the nurse told me that the OB was not going to schedule it until Ryan was closer to being released and that they'd probably do it the day before he was discharged. Since they won't schedule it yet, this made me wonder when on earth are we ever going to get out of here???

Exhausted

Dan and I are both so tired. Feels like we've been here for a very long time, but so far it has just been 9 days compared to 12 with Ethan. Don't know yet which one of our boys will be able to "boast" the longer NICU stay. After Ethan's NICU stay I said that I couldn't do this again, and now that we are here again, I can say that we really, truly can never do this again. Too scary, stressful, and draining. In the NICU Ryan is on an every 3 hour feeding schedule. Since I'm trying to nurse him, I try to feed him first (which takes at least a half hour because he is so groggy), then he receives a supplement through his nasal-gastric tube while I pump, then I have to wash and reassemble the pump parts, and seems like there is not much downtime to eat, go to the restroom, sleep, etc. before we start the cycle over again. Not to mention Dan and I didn't get much sleep the first couple nights in the postpartum room because we were so worried about Ryan's status. I can't tell you how thrilled I will be when Ryan is discharged, but at this point he is not doing very well with nursing. During one feeding time tonight I tried working with him for 40 minutes unsuccessfully. He just would not latch on. Please pray that he catches on soon and stays awake long enough that he can be weaned off the supplement and still be able to gain weight. I'm getting pretty discouraged. According to his weight this evening, he's gained 2 ounces since yesterday, but that is probably primarily because he is receiving such a large supplement at each feeding. A lactation consultant who comes highly recommended is scheduled to work tomorrow, so she is supposed to stop by to help.

Ryan got one item checked off his "going home" list this morning. His nurse administered the newborn hearing screen, and thankfully he passed! Gentamicin exposure has the potential to cause hearing loss (both Ethan and Ryan received doses of this antibiotic in the NICU), so it is a relief that both passed their hearing screens.

Mom brought Ethan back to our house today, and Dan is going to take care of him there instead of staying at the hospital. We thought it would be best for him to be back at our house and readjusted to being there before we bring Ryan home. I was able to go home for a short time this morning to see Ethan and shower. It was so great to see him. He kept saying "Mommy went to the doctor" and he noticed my hospital bracelet right away. Hopefully he'll get to actually meet his little brother soon!

Sorry for the delay in blog posts, since Dan worked from home on Friday and has been sleeping there, I have had less access to his work laptop than before. Tomorrow Dan will bring me a different laptop that I'll be able to keep at the hospital, so I should be able to post more timely updates.

Saturday Update

Apparently the one brief stint that I slept this morning was when the neonatologist decided to do rounds. I was disappointed not to get the opportunity to ask what he or she thought about Ryan's episode of bradycardia. So, we still don't know for sure if this will impact his discharge date. Thankfully Ryan's oxygen saturation level and respiration rate have been stable at room air for many hours now, so he is doing well when it comes to his respiratory issues. In order to be able to be discharged, we need to get nursing established and Ryan needs to gain some weight. His weight dropped 13 ozs after birth before he could receive oral feedings, jumped back to 6lbs 8oz (while he was still receiving IV fluids), and since the IV fluids were discontinued has dropped to 6lbs 7oz and then 6lbs 5oz. His weight increased tonight, but only by 5 grams which is a really miniscule change. This is discouraging because, not only am I trying to nurse him at the beginning of each feeding, he is also receiving supplemental expressed breastmilk through his nasal-gastric tube at every feeding (between 1 and 1 1/2 ounces). Several nurses have said that oftentimes preemie babies (and those with respiratory issues) have difficulties nursing at first, but then a "light comes on" and the babies suddenly grasp the concept. Please pray that the light comes on for Ryan very soon as we are very anxious to take him home (obviously!) One of the nurses had us bring our carseat into the room today because Ryan will have to pass a carseat test in order to be discharged (1 hour sitting upright in his carseat keeping his oxygen and respiration rate stats up). We were disappointed though when we were told that the test wouldn't occur yet because it still may be awhile before he is approved to go home. In other "news", since Ryan no longer needed the bed warmer and other medical accessories in the isolette, he was "upgraded" to a basinette today.

Dan and I have been missing Ethan so much. Until this week I had only been away from him overnight for one night in his entire 2 1/2 year life. Thankfully mom and dad live just about a 40-minute drive away. They have done a wonderful job taking care of him, and he has had a lot of fun with them this week. I'm sure that he doesn't quite grasp everything that is going on, but he knows that mommy and daddy are at the hospital, and my dad showed him digital pics of Ryan on their TV. Dad took Ethan to a train show today at a local civic center where there were all sorts of train layouts and collectibles. Dad said that Ethan absolutely loved it. We have missed him terribly, but it makes us feel better knowing that Ethan has been enjoying this time with his grandparents and uncle Mike.

Almost One Week Old

We experienced some progress and some scares with Ryan today. First thing this morning the primary neonatologist stopped by and said that he had decided to turn Ryan's nasal cannula airflow pressure down to a 1/4 liter. He also said that the lab result for Ryan's bilirubin from early in the morning was lower than it had previously been, so for now he has discontinued the light therapy (though this value may rebound later, so he has another lab draw to test his bilirubin scheduled for tomorrow morning). Ryan again repeatedly pulled out his nasal cannula today. I looked away for a second, and the next thing I knew, it was around his neck, hanging mostly out of his nose, or it was actually in his mouth. So when the doctor did rounds at 10am, he decided that we could discontinue the nasal cannula airflow completely since Ryan had pulled it out so many times already and his stats had remained okay. His nurse this morning found a onesie for him to wear since he doesn't have an IV anymore and it is no longer as critical to be able to view his respirations. So now the only wires/tubes attached to Ryan are the leads to monitor his heart rate, respiration rate, and oxygen saturation level, and his nasal-gastric tube. I have been attempting to nurse him at the beginning of each feeding, and he seems to slowly be getting the hang of it but gets cozy and sleepy quickly. The rest (which, for now, is the vast majority) of his feeding is given to him through his nasal-gastric tube. What is kind of neat is that his nurses can extract the air from his belly using a syringe before they give him the nasal-gastric feedings. Wish getting rid of gas from his belly could be that easy once we get him home!
Ryan gave us a couple of scares today. His oxygen saturation level had been staying in the high nineties to 100 and continued to do so when his nasal cannula was first taken entirely away. However, later in the day he drifted into the mid- eighties for awhile on a few occasions, but eventually returned to higher numbers. If he stays in the low to mid- eighties for very long or has repeated short periods of numbers this low, then he would have to go back to using the nasal cannula. Fortunately at this point he hasn't "hung out" with low values long enough to warrant taking this step back. Another random scare was that his monitor went into high alarm for his heart rate this afternoon. He had a very brief incident of brachyardia (slowing of the heart rate) where the rate dipped way down, but then recovered quickly while he was in a deep sleep. Our nurse said that typically the neonatologists want to monitor babies who have had a bradycardia incident in the NICU for 5 days afer the incident occurred to ensure that no more similar episodes happen. Another nurse didn't think that one episode would warrant preventing him from coming home if he is able to get up to speed on eating enough to be ready for discharge in less than 5 days. We'll have to wait and see what the neonatologist on duty this weekend thinks about it tomorrow.

The nurses keep saying that Ryan will all of a sudden "get" how to nurse, so I am hopeful that this happens soon. Please pray that he is able to get into a normal pattern of feedings, takes less through the N-G tube, and also that the bradycardia episode is nothing to worry about.

My dad came to visit Ryan today and took some cute photos of him. He looks so much better without the scalp IV and nasal cannula!

Ryan in my lap with his WubbaNub (pacifier with a stuffed dog attached). The stuffed animal helps anchor the pacifier so that it doesn't fall out. Ethan had the same WubbaNub when he was in the NICU.

Ryan peacefully sleeping
I love the pose, chin resting on his hand

Thursday Update on Ryan

Each day we've seen positive progress for Ryan's health (even when there have been setbacks, he still manages to have improved at least a little bit from the previous day by midnight). Today the neonatologist decided to increase his feeding volume through his nasal-gastric tube quite a bit so that he could be weaned off of the IV fluid/protein/fat mixture. This was good timing because the IV that was placed in his arm yesterday began to fail early this afternoon. His nurse managed to keep it flowing (even though it was leaking) for a few additional hours until the TPN mixture ran out so that Ryan wouldn't have to undergo another IV placement. The oxygen weaning process is very much a "two steps forward, one step back" or sometimes "two steps forward, more that two steps back" process. Sometimes he has tolerated turning down the oxygen a little very well, while other times his stats drop and we have to jump back a few steps to get him re-stabilized before trying again. He's a fiesty little guy too, so he has pulled out his nasal cannula umpteen times during this process. In addition to weaning him off the oxygen, he also has to be weaned off the pressure of the air flow through the nasal cannula. As of nearly midnight, he is down to a half liter of pressure of room air through the cannula, so really just one step away from normal room air without the cannula which is great as long as he can keep his stats up once he gets there. Ryan's bilirubin count has been creeping up daily, so the doctor decided to start him on phototherapy today. Ryan has to wear these little purple foam "goggles" to protect his eyes, and he wasted no time letting us know that he is not a fan of wearing the goggles. He has managed to get them off his face many times, so I've spent a lot of time today putting either his goggles or his nasal cannula back on. We also got to hold him several times and to attempt nursing a few times today, but unfortunately our little guy has been very groggy, not to mention he still has a nasal-gastric tube threaded down one side of his nose and a cannula up both sides of his nose. The nurses said that this is typical for a persistent pulmonary hypertension baby and to expect him to improve with time. Even tomorrow he may be much better at trying to nurse than he was today. Thanks so much again for all of your phone calls, emails, prayers, support, meals, etc.; They have been very uplifting. If you've left us a message and we have not yet gotten back with you, please know that we do appreciate your care and concern! Our family wouldn't be doing nearly as well (physically or emotionally) if it weren't for all of you!

Update for Wednesday- Dan and I got to hold him!

Today the primary neonatologist's comments during rounds were much more encouraging to us than previous days. He said that today he was less worried about Ryan than he was yesterday, and that yesterday he was less worried than the previous day, so basically Ryan is showing signs of going in the right direction but is not yet "out of the woods" when it comes to the risks of persisent pulmonary hypertension. Since he has been tolerating feedings well, they increased the amount of breastmilk that he'll be receiving during each feeding through his nasal-gastric tube. They felt comfortable enough with his respiration rate and oxygen saturation level that they decided to begin weaning him off of oxygen slowly with the goal to at least transition him from his hood to a nasal cannula at a low oxygen percentage by the end of the day. He started out at about 60% oxygen in his hood, and when he got down to 40% successfully, they transitioned him to a nasal cannula. He currently still has the nasal cannula and is at about 35% oxygen. It is still important to limit stimulation, so it was really unfortunate when the IV in Ryan's scalp went bad this evening. It has lasted longer than anyone had anticipated, but losing it happened at a bad time (would have been better to try to get a new IV started if he were already down to being on room air and the amount of stimulation he received were not as important). It took awhile to remove the tape that had held his scalp IV (it was stuck in his hair, poor little guy!), and then took another 45 minutes to find a good vein and to successfully get another IV started. So that was a LOT of stimulation for him, but fortunately his stats remained good. He is not receiving any meds via IV anymore (the antibiotics were stopped yesterday when the bacterial cultures returned negative), but he does still require an IV to keep up his fluid level and to receive additional nutrition (proteins, fats, etc). After his IV was placed, Dan and I both got to hold him for a short time which was awesome! We could get close enough to him so that he could see us with his limited newborn vision, and it was so sweet to see how he just stared and stared at us totally wide-eyed. Since he had so much stimulation this evening, his oxygen weaning will be slowed down even further so as not to over-stress him. I'm not sure when he'll be down to room air, but the nurse who is caring for him tonight said that he's not "in the clear" until he's been on room air for 24-36 hours and maintained his stats. Apparently up until that point there is a real danger that a stressor could cause him to relapse into a hypertensive state. Thanks so much again for all of your prayers! We appreciate them and can see them being answered as we continue to take baby steps toward Ryan being completely healthy and permitted to come home.

Brotherly Resemblance

After getting a chance to upload some of the photos we've taken of Ryan so far, two of them struck me as bearing a very strong resemblance to Ethan. One of the nurses here was curious to see photos of Ethan when he was a newborn, so I checked to see if the Care Page that we set up through the hospital for Ethan's NICU stay was still active. Surprisingly Ethan's Care Page has not yet been removed from their system for inactivity, so I was able to copy and paste a photo from it. See what you think:

Top 2 photos are Ryan

Ethan

What do you think?

Photos of Ryan

We have finally been able to upload some photos of Ryan:

Just after Ryan was born (first NICU consult, pre-whining sounds)

7lbs even, 20 1/2 inches

Thank goodness my OB caught him!

Looking at mommy
After admission to NICU- with CPAP machine
Ryan's "bed" in the NICU
Another pic while he was on the CPAP machine

Ryan after his lung collapsed, the air was removed from his chest cavity, and then he was provided with oxygen in his "hood"

Trying to get his pacifier in the hood

The photo is dark, but you can see one of his feet was folded flat-footed against his bottom. I suspect this was how he was situated in the womb!

Ryan's Exciting Birth Story

Thank you all so much for your encouraging words, prayers, and support! It means so much to us to know that we have have such a wonderful support system of family and friends. We appreciate you!
Several people have asked how I'm doing, so I thought that I'd post a little bit about the "story of Ryan's birth" and how I'm doing (on a lighter note) instead of focusing on the health issues that Ryan is currently facing. His birth story would have made for an exciting episode of TLC's A Baby Story! When I woke up experiencing contractions, they were already 1 to 3 minutes apart and 15-30 seconds in duration. Since my water breaking had triggered our trip to the LDR with Ethan, I hadn't needed to count/time contractions before. I had to dig up my folder of info from the OB office to find out how many contractions within what period of time is cause for calling the doctor's office. My office's paperwork said "contractions every 8 minutes for 1 hour". Silly me decided to wait an hour and half of experiencing more rapid contractions before calling the doctor (I thought since this was so early, surely it would turn out to be false labor). We called the doctor and my parents at about 4am. The doctor suggested that I take a shower to see if the contractions dissipated, but when I told her that I already had done that, she recommended that I come in to triage. Mom arrived at our house at about 5:15am to stay with Ethan, we got to the hospital at about 5:30am. Triage took longer than I had expected! The nurse asked me about 45 minutes worth of medical history questions while I paused my responses here and there to breathe through contractions before she checked how far along I was. When she checked me at about 6:15am, I was 3 to 4 cm and had continued with regular strong contractions every 1 to 3 minutes. So, I was admitted, requested my epidural, and was comfortable with epidural pain relief at about 7:15am. The doctor didn't arrive until about 9:15am at which point I was 8-9cm, and she broke my water. They wanted me to wait to push until I felt some pressure, but when I still didn't feel any pressure at about 10:15am, my nurse checked and said that I had probably been fully dilated for quite awhile. She decided to have me try a practice push, and with one push, he was crowning. She told me to stop pushing and RAN out of the room to find the doctor. Thankfully my Dr. happened to be just outside in the hallway because the nurse said that if she had needed to page her, the doctor wouldn't have made it in time. My Dr. had one glove on and she and the LDR nurse were turned the other way (talking to the NICU staff who had arrived because Ryan was going to be delivered under 37 weeks of age), when I shouted, "I'm not pushing, but he's coming out on his own!" My Dr. spun around, quickly pulled her ungloved hand under the sleeve of her gown, and literally caught Ryan with her arm and single gloved hand. Dan had seen all this happening and had lunged forward in case no one else made it in time! So, Ryan had a pretty exciting birth, entering the world on his own timing (guess he waits for no one!), and literally barely being caught by my OB.
Thankfully since my labor and delivery with Ryan went so fast, I have been doing really well recovering. One of Ryan's respiratory therapists gave me a mini-lecture on overdoing it after seeing that I walked to the NICU from the LDR later in the day after he was born instead of asking someone to bring me in a wheelchair. I was too anxious to see Ryan (Dan was already with him) and didn't want to wait for a nurse to be available to take me there in a wheelchair. So it's a huge praise that my recovery has been really quick and easy and Dan and I have both been able to be with Ryan in his NICU room nearly the entire time since he was born. Now if we could just all get out of here together... ;)

Update from Morning Rounds

During morning rounds we learned that Ryan has lost a substantial amount of weight because he has been fed primarily through a sugar water IV and has only been receiving a half ounce of breastmilk every 3 hours since yesterday. He is down 13 ounces from his birth weight of 7 pounds, so the doctor ordered that a protein mix (TPN) be added to his IV. They are hoping to be able to up the amount of breastmilk per feeding possibly tomorrow depending on how he is doing. He has a lot of mucus in his GI system and has spit up several times, but the nurse practitioner said that his GI motility should improve once they are able to increase his feeding quantity. Regarding his resipratory issues, he is doing a slight bit better maintaining his oxygen levels, but the doctors would like to see him doing much better before they consider trying to wean him down from the level of oxygen he is currently receiving in the hood. They are going to keep everything the same at least for the next 12 hours (including continuing to enforce very limited stimulation) and then re-evaluate him. Hopefully he will improve more dramatically during that time and they'll be comfortable trying to wean him off the oxygen. They also warned us that, assuming he improves and then tolerates slowly weaning him off the oxygen, he will likely have a lot of feeding difficulties. They said that the vast majority of babies who overcome pulmonary hypertension have problems with feeding. Unfortunately we are way too familiar with feeding difficulties from our experience with Ethan. Please pray that Ryan turns the corner within the next 12 hours and really shows improvement in keeping his oxygen saturation level up on his own and respiration rate down. Please also pray that the doctors are able to start weaning the oxygen in his hood down, that he tolerates it well, and that we are able to hold him as soon as possible. I am hopeful that he will "prove them wrong" about feedings and do much better than they are expecting him to do when it comes to eating/nursing. I asked if the nurse practitioner could guesstimate when we might be able to go home (assuming all goes well and his condition doesn't worsen), and she said her best estimate would be 1-2 weeks from today. We were a bit surprised (and definitely disappointed) that Ryan might need to be here that long.

Ryan's Diagnosis is Pulmonary Hypertension

We received the results of Ryan's echocardiogram at about 2:45pm. The primary neonatologist explained that the report shows that Ryan does have the scariest (and what we were told was the least likely) of the possible issues going on, pulmonary hypertension. The doctor was very good about answering our questions and describing in detail what this diagnosis means.
I'll try to explain it, but many of my friends have much more knowledge in this area than I do, so please feel free to post corrections or a better explanation. Basically when a baby is growing in the womb since the lungs are not needed, the circulatory system shunts oxygenated blood to other parts of the body. Once the baby is born, the entire circulatory system's flow changes such that oxygenated blood flows to all parts of the body that require it (including the vessels in the lungs). This transition of flow in the circulatory system usually takes between 5 minutes and 5 hours to occur in most newborns. Pulmonary hypertension results when the bloodflow does not change, and the vessels in the lungs do not dilate nor receive oxygenated blood as they are supposed to (the baby's circulatory system behaves as though he is still in the womb even once the lungs are needed after birth). http://www.healthsystem.virginia.edu/uvahealth/peds_hrnewborn/pph.cfm
There are 3 different treatment options depending upon the severity of the symptoms that a baby manifests. The first is to keep the baby at 100% oxygen for 12-24 hrs (oxygen is a vasodilator) with the hope that the circulatory system will start functioning as it should on its own. After remaining fully saturated with oxygen for some time, then weaning off the oxygen occurs at a slow pace (they had attempted to wean Ryan's oxygen supplement pretty aggressively last night and he didn't tolerate it well this morning). If his circulation doesn't resolve with this course of treatment, then the next step is to intubate him and he would be on a mechanical ventilator for 7-12 days, receive surfactant treatments for his lungs, and then try to be weaned off of the vent. If that doesn't work, then he would require ECMO (Extracorporeal Membrane Oxygenation) treatment which is only available in level 4 NICUs (we are at a level 3 NICU). The availability of this equipment and personnel trained to use it is what differentiates a level 3 and level 4 (highest) NICU. I shouldn't have, but did, look ECMO up online and now wish that I hadn't because it's very scary: http://oce.sph.unc.edu/phnceac/babyguide/ecmo.pdf
If this treatment were to be required, it is available at the children's hospital downtown.

After this explanation, I asked the doctor if the collapsed lung was a completely separate issue that was actually unrelated to the root cause of his respiratory issues. He confirmed that these complications are completely unrelated and both were originally explained to us as being very unlikely to occur. We've informed the nurses, but not yet the neonatologist, that it seems for our family oftentimes when a "very unlikely but serious" complication is a possibility, then count on us to experience it. Please pray that the first option for treatment is successful for Ryan. It would break my heart and be incredibly scary to have to see him be intubated and on a ventilator. Since the hood is still required, we cannot hold him, and he is still supposed to be very limited in stimulation. Hopefully I'll have some good news to post over the coming days.

Morning Rounds

Our nurse overnight told us early this morning that Ryan had a great night and that the oxygen level in his hood had been turned down from 100% to 30% and he was doing well. Later this morning the respiratory therapist transitioned him from a hood to a nasal cannula, and apparently he was quite upset with this change and wasn't keeping his oxygen stats up, so they had to raise the oxygen level in the cannula to 100% and then weaned it later to 75%. He began to make the "whining" sounds again intermittently, and the nurse practitioner was perplexed as to why Ryan did so well while they weaned down the oxygen level in the hood but was not doing well with the cannula. We had been encouraged because our nurse said that if Ryan maintained his oxygen stats with the nasal cannula, we could maybe give feedings by bottle instead of IV and also that we'd be able to hold him. However, when the primary neonatologist did rounds this morning, he was very concerned about the fact that Ryan had not been doing well with the nasal cannula, so he ordered that he go back to the hood at 100% oxygen and that a chest x-ray and echocardiogram be done. The purpose of the chest x-ray is to rule out recurrence of the pneumothorax (collapsed lung), the echo is to determine if he has any sort of heart defect that might effect gas exchange in his bloodstream, and the 100% oxygen in the hood is in case he is developing pulmonary hypertension (which both he and the previous neonatologist have explained as being a very scary possible explanation for what's going on). At this point the results of the chest x-ray are back and look good (so no recurrence of the pneumothorax). The echocardiogram tech just left our room, and he's going to transmit the echo to Riley to be read this afternoon. The nurse also just gave him his first feeding using the oral-gastric tube, and he seems to be tolerating it well. We are anxiously awaiting the results of the echocardiogram. Please pray that his lungs just need a little more time and a little help from the oxygen hood and that his condition is not the result of a heart defect or pulmonary hypertension. Also, blood cultures were started when he was first admitted to the NICU to determine if he has some sort of pneumonia, and we are still awaiting the 48 hr results of those. If infection turns out to be the reason for his condition, then he will need to undergo a 7-10 day course of antibiotics.

Ryan's Arrival

Ethan was 2 days overdue when he was born, so Ryan Matthew took us by surprise when he decided to make his appearance 25 days early! Ryan was due on February 25th (and I was scheduled to be induced on the 16th), but my contractions began at 2:30am Jan 31st. I thought that they might subside on their own, but at 4am decided that we should call the doctor and head to the hospital. Thankfully mom was able to come to our house to watch Ethan so that we didn't have to wake him and take him with us to the hospital. Dan and I scrambled to pack our bags (he was so early we were unprepared!) and rushed out the door. At triage it was quickly determined that I should be admitted, so I was officially admitted around 6am, and Ryan was born at 10:27am. He's 7lbs even and 20 1/2 inches long. At first we thought that the sweet "little cries" that Ryan was making when he was born instead of all-out wailing were cute, but I could tell from the expression on the face of our labor and delivery nurse that she was concerned. After he consistently made what the nurse termed "whining" or "singing" sounds, she called quickly for a NICU consult. After the rollercoaster of major complications and health issues that landed Ethan in the NICU for 12 days, we were hopeful to have a nice, normal delivery and hospital experience with Ryan, but unfortunately that hasn't been the case. The NICU staff confirmed that he was experiencing severe respiratory distress and quickly rushed him away for observation. I had held him for about a half hour and Dan got to hold him for just a few seconds before he was whisked away. The neonatologist said that he was having a lot of difficulty breathing and the cause was unknown, could be infection (pneumonia), fluid in his lungs, or premature lung disease. She ordered a variety of breathing treatments and threaded a tube into his lungs and extracted some "junk" and fluid, each of these resulting in very short-term improvement, but he would relapse into respiratory distress. He was put on a CPAP breathing machine yesterday with the plan to try it for 10-12 hrs and then remove it to see how he would do breathing on his own. At 1:30am we received a call that his blood sugar had plummeted to 29 (one of Ethan's most critical issues was having dangerously low and even undetectable blood sugar), so the nurse quickly gave him additional sugar-rich fluids to try to raise it back into the normal range. Thankfully his blood sugar value rose to just above the critical cut-off (40), but the staff is continuing to closely and routinely monitor his blood sugar. When he was first put on the CPAP machine, we asked the doctor what the risks were to using it. She indicated that there was a risk of lung collapse, but that this risk was very minimal. We should have explained to her then that, when dealing with our family, even if there is minimal risk of a complication, you should count on it happening... We tried to get a little sleep this morning, but were awakened by a frantic phone call at 7:30am that the very minimal risk situation had happened, Ryan's lung had collapsed. I guess that there are varying degrees of lung collapse, and his was severe. The neonatologist had to insert a needle into his chest cavity and withdrew 80 cc's (a lot) of air. She later showed us before and after chest x-ray images that showed that during the lung collapse, the collapsed lung was putting pressure on Ryan's heart such that it literally moved his heart dramatically in his chest cavity. After the procedure, his heart and lungs returned to where they ought to be. The doctors have been monitoring him closely to see if the tear in his lung tissue will heal over on its own or if air is continuing to leak out. The CPAP machine was removed, and a hood with 100% oxygen circulating in it was placed over his head. He is currently receiving doses of 2 antibiotics (routinely administered after having the procedure done to remove air from his chest) through an IV in his scalp. He is also not permitted to eat by mouth at this point (he is receiving fluids through IV). All day today he has been restricted to absolute minimal stimulation because if he gets riled up and cries much, he runs the risk of re-opening the tear in his lung. This means that we are not allowed to touch him unless he gets upset and we are attempting to settle him down. We have also not been permitted to hold him since he was admitted to the NICU which has been very difficult, especially when he gets upset or has to be poked or pricked for tests and we cannot hold and comfort him. Another chest x-ray was ordered tonight, and the neonatologist said that it looks as though at this point a lung collapse has not recurred. The neonatologist on duty today had been extremely concerned about his condition this morning (though she didn't reveal to us what the extent of her concern had been until this evening), but she seemed more confident that his health is beginning to "take the right path" tonight. Ryan's nurse turned down the oxygen level in his hood a bit to see how he does. Please pray that Ryan's condition continues to improve and that our nurse will be able to keep turning down the oxygen level in his hood without causing Ryan to relapse into respiratory distress. Please also pray that he is able to take fluids by mouth soon and is able to nurse. Thanks SO much for your prayers and support- they mean the world to us! I will try to post regular updates on Ryan to our blog and hopefully add some photos soon too.