Home at Long Last

As of last Wednesday we are all finally home. Rylee was discharged Wednesday, and once we picked her up we drove straight home. It has been an interesting adventure thus far, and we can't thank my mom enough for all of her help. We have spent the last week learning adjusting to the girls, as well as attending doctors appts (four so far). Our first night home was the ultimate introduction! Rylee spiy up all down my shirt, followed by a nice big Haylee blow out!! Both girls are doing wonderful!! Haylee continues to grow everyday! She is up to 7 lbs 8 oz. Rylee isn't too far behind, weighing 6 lbs. They had their 2 month birthday yesterday, and time seems to just be flying by.

We have had many sleepless nights, and days full of feedings, and diaper changes. Ryan and I are learning as we go and enjoying every sleepless minute. I never knew how fast three hours could fly by. We see more of their personalities everyday! Haylee is a calm and content baby. She just loves to hang out and view the world around her. Rylee on the other hand is quite feisty! When awake she wants to be held, and will let you know when she needs something!! 

Almost There

As of Monday (7 Sept) Haylee has been home with us, which is in part why it has taken so long for an update. It has been quite an adjustment, but something we wouldn't change for anything! As of right now Rylee is still in the hospital and we are somewhat unsure of when she will be released. With Haylee home and Rylee in the NICU our time is now split between them. One of us has to stay home (in the hotel) with Haylee, while the other goes to the NICU to spend time with Rylee. 

Though Rylee is doing better with her feeding, it is still inconsistent. Ryan fed her the other day and she Desated into the 30s, requiring assistance to come back. However, yesterday I fed her and she did a wonderful job, not Desating one time. So it is up and down with her still as she works to overcome the effects of her reflux, and prematurity. At this time she is still on oxygen, but the Dr.'s are thinking about switching her back to having oxygen only while she is feeding. No matter which way they go she will be coming home on oxygen and the apnea monitor.

Our Fight

            The helplessness that you feel as a NICU parent is like no other. As a parent you know that you need to be strong for your children, but no one ever really mentions that helplessness you feel that accompanies it. We try to be strong everyday and walk into the NICU with a smile on our faces. We hold our precious babies, I wake up every three hours (day and night) to pump food (life juice as we call it) for my girls, we have learned how to stimulate our daughter when she DESATs so low and needs assistance to recover. Yet as we do all these things we remain helpless. This is a fight that we can’t do anything about. Our girls have been tremendous fighters, and continue to be so. But, I can’t help but be overwhelmed with sadness and frustration for them. Haylee is doing great and should be coming home soon. Each time we think it might happen, something occurs and they extend her time. Even though she will be released, once home her struggle still continues. She will be home on a monitor to alarm us if she at any point stops breathing, in which case we must intervene. All things considered she is doing great. She had a rough start, being born 2 months early, but has prevailed.

            Rylee on the other hand continues to struggle. She is our little "mini" fighter. She was born as a micro preemie, weighing 2 lbs and 15 oz. Her fight has been a tough one, full of many successes and setbacks. Though born small, she is full of fight! Every time we walk into the NICU we never know which direction she will be going.  We relish in the steps forward and grieve for the steps back. As of this morning her DESATs have continued, so much so that she is back on oxygen and having chest x-rays. Luckily, it tends to occur only during feeds and should get better with time and maturity. Though this offers some reassurance I can’t begin to explain the heart wrenching feeling of feeding your daughter, and then having to revive her when she stops breathing and can’t come back on her own. This is again where strength and helplessness combine into one. We know what to do to bring her back, but having to do it because she can’t is very tough. Holding her after she eats and hearing her fuss and cry because of the pain of the reflux break our hearts. We wish we could take it away and make it better for her. In time this will change and she will get better, and for that we are eternally grateful. We are blessed that we have two beautiful daughters, who given tough circumstances will come out of this OK.  We cherish that fact and are truly grateful for it. But in the here and now it is just hard. As a mother I don’t want them to experience pain, and I want to fight these battles for them, to make it better and I cannot.

Its a Matter of Time

We were initially hopeful that the girls would be home at 35 weeks. We have now hit the 37 week mark, and we do not know when they will be ready to come home. I know they need more time, and as they get older and bigger things will get better. 

As of right now Rylee is still struggling with her breathing. She continues to have episodes where she stops breathing long enough to change color (blue) and need stimulation to pick it back up again. She had two major episodes today, one requiring the RNs to use oxygen on her. The good news is that she does not have any major problems or conditions that are causing the episodes to occur. This however, does not make it any less serious or stressful when it does happen. As of right now we are not sure when she will be able to come home. She needs to take all of her bottles by mouth (just she becomes overly tired and is unable to do so) Part of her episodes are also due to her being exhausted from trying. As a parent it is very difficult to watch her struggle and know there is not much we can do. We are there everyday and hold her while we are there, reassuring her along the way.

Haylee continues to do well. She is eating all her feeds by bottle with little trouble. She has had some color changes (desaturations) during some feeds and did require stimulation earlier this week. Overall she is doing great, but they are keeping an eye on her due to the small episode. She is in good spirits and showing her personality more and more everyday.

This has been a very difficult situation for both Ryan and I. We knew that having been born so early there would be set backs and struggles along the way, however there is no way to prepare yourself for what occurs. They are beautiful, sweet baby girls, and we look forward to having them home. The stress of the situation seems to be compounded by the stress of being so far from home, and trying to figure out what to do once they are home. There are limited resources where we are at, and being so far away from their needed healthcare is concerning. We are taking everything one day at a time an will figure things out as it comes.

 Haylee

Rylee