Since Returning Home

Having the girls home at last has been wonderful! They continue to grow and develop everyday. It is definitely different and life changing, but wonderful. Since being home we have had numerous doctor follow ups. With each appt. the girls are doing great and continuing in the right direction. Mocha (our choc lab) absolutely loves her babies. She is great with them and tends to go where ever they are and if they cry she looks at us (or barks) to make sure we respond to them. Also, if Ryan and I turn our heads for just a second she will sneak in for kisses. They seem to be ok with it and don't fuss when it happens. 

Ryan and I have adjusted to functioning on very little sleep (though it is not easy at all). We have greatly appreciated the help from Grammy, Mimi, and Papa and look forward to having Grandma here this weekend. Everyday their personalities are showing more and more, and I love watching them grow and develop. Though they are out of the NICU Ryan and I are still concerned, and watch them very closely (especially when the monitors go off).

Haylee is doing amazing. She continues to grow and gain weight with ease. She is around 8 lbs now and going strong. Since being home her reflux has gotten slightly worse and she has also been put on prevacid. Overall, she is a very content baby, and really only seems to fuss when gassy or hungry. She spends most of her time eating, and then sleeping. When she is awake she loves to take in the world around her. She will stare and watch everything that is going on, and has the cutest facial expressions. I just love to watch her learn and explore. As of right now she is not a huge fan of tummy time, she tends to just sleep right through it!

As far as things go for Rylee, she has a few more medical concerns than her sister, but is doing fantastic. Also, what she seems to lack in size she more than makes up for in personality. She knows what she wants, when she wants it. About a week ago she decided she no longer wanted to be on oxygen. For a few days she was pulling it out every chance she got. Then one day I picked her up from her nap and the cannula was above her nose and the tape was somehow in her little hands. At this point I gave up fighting with her and called the pulmonologist. The doctor agreed to trial her off of oxygen and she has been doing great! She is doing much better with her feeds, though she still has an episode or so occasionally. Because of this the pulmonologist requested she see a cardiologist just to be on the safe side.

  

 Rylee

 Haylee and Mocha

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
 

Day By Day

Some days you just need to breathe, believe, trust and step back to witness the incredible strength of your tiny miracle….Julia Toivonen

The NICU experience is truly day by day. Within a day of posting about Haylee coming home the plans began to shift. I believe we waited a few days about her coming home just to make sure it was happening. Though we waited it only took one day for that to change. Haylee was pretty set to be coming home this weekend, and at this point it appears it won't be for another week or so. Wednesday night heading into Thursday Haylee began to struggle with some of her feeds, we didn't think too much of it and figured she was just getting tired from all her hardwork. Well come Thursday we got a phone call from our RN, who told us Haylee had an episode that morning where she needed to be stimulated to begin breathing again, and she took some time to recover. Because of this and her hemoglobin levels Haylee was going to need a blood transfusion. After the transfusion she has been doing much better, though she has not passed her car seat test yet. As much as we want Haylee to come home we do not want to rush her. We were disappointed, but have come to understand that things change from day to day, and we have to follow the girls lead.

The same day that Haylee was given a blood transfusion, Rylee was given one also. The previous night Rylee had three episodes while I was holding her. At one point her oxygen saturation dropped as low as 38. With each episode she would dip and not fully recover in between. Along with the episode her skin color was very pale, and we could tell something was off. That night the RN drew labs and Rylee was very low on her hemoglobin as well. Following the transfusion Rylee seems to be doing well, but not fully there yet. Friday wasn't very eventful, but today was. She again appears pale, and did have three episodes. But she is a fighter and seemed to have turned things around as we were leaving. When we asked what it could be the RN let us know there were multiple possibilities, but three that would be most likely. One is that she just tired from all her feeds and needs a little break, two she may need one more transfusion, or she could potentially have an infection. After taking a break from her bottle feeding, she appears to be doing better. Hopefully that is a sign that she just needed some extra sleep.

As I write this even though I am discouraged, we still feel very fortunate. So many premature babies have a host of other more serve conditions to fight through, and we are just so blessed with the girls. Though they struggle at some points, they are overall healthy, thriving, and doing well. They continue to gain weight (Haylee is now 4 lbs 15 oz and Rylee is 4 lbs 2 oz), and will eventually outgrow the apena and reflux. It is a lot to work through, but in the end they will be ok.

Rylee taking a nap and Haylee hanging out. 

HAYLEE IS COMING HOME

As the title might give away, Haylee is coming home. We met with the doctor today and he told us we are in discharge mode with her. He estimated about 3-4 more days (Nurse believes it will be sometime over this weekend). No matter when we can't wait to have her "home" (in the hotel) with us while we wait for Rylee. At this point Haylee has had her feeding tube removed, and has thus far taken all feeds today by bottle. The only obstacle that remains is she must pass her car seat test. 

Though Rylee isn't being discharge this weekend, she is close to discharged as well. They aren't really willing to give an exact time-frame, but it seems like it would be two weeks max. She continues to gain weight, and is 2 oz from meeting the 4 lbs requirement. Also, she is taking a bottle every other feed, sometimes two in a row. She is doing a great job trying to meet all her goals. As of this morning she is out of her isolate and into a "crib". Though she still has an episode or two of not breathing, it will not hold her up from being discharged. She will more than likely be sent home on a monitor. We can't wait to have all of our family home together